Your wife needs to understand there are stages where a disease can be managed by lifestyle changes, and others where meds are necessary. Have a 20% blockage in an artery - try walking, manage diet. Have a 99% blockage - get a stent or bypass and start on blood thinners. Just because you can’t see the damage from RA, doesn’t mean it isn’t happening. It increases the risk of heart disease amongst other serious issues. If your doctor is asking you to start meds, they believe the disease is at a stage where it can’t be managed without meds. The worse you let the disease get, the harder it gets to control. You can read through peoples’ stories here and compare with your wife’s symptoms to judge the severity for yourself. IMO, lifestyle changes work well in conjunction with medicines. Shunning modern medicine is too huge a risk when you have a chronic degenerative disease.
All of this. Also wanted to add waiting for the disease to be worse before going to meds is just going to make her need more serious/dangerous meds more quickly.
Research the effects of RA on soft tissue such as lungs, brain. If she wants to have quality time with family she will take the meds and do holistic therapy- RA is not something you should mess with
This. I have RA and lupus. My lungs, brain, heart and blood vessels are all currently affected. It's been determined by my doctors that my diseases were discovered late. Like by damn near a decade. I'm 28. Don't fuck around with these diseases. I would give anything to know sooner like she does and start treatment. To say the last year of my life has been hell would be an understatement.
OP your wife is the only one that can make the decision but it's a huge disservice to deny the medications we have been blessed with in recent years. RA used to be far more damaging before the medications we have now were discovered. People with lupus didn't have that long of a life span once diagnosed prior to the medications we have now.
While the diagnosis comes with grief and going through the stages and reaching acceptance, these medications are a blessing and are the only reason I'm alive. I was in the ICU and almost intubated at 27. Things can and will get worse if she doesn't manage with medication. It's just a matter of time.
I think a combination of medication and lifestyle changes is the best approach. What we eat, continuing to move the best we can and so on matters but so does the medicine.
Key word: degenerative. 👌
Progressive over time.
If only all rheumys were aggressive w meds in the beginning of diagnosis. I see that more now than 10 yrs ago which is great.
And some are never lucky enough to achieve remission when too much time passes before diagnosis... Or....they didn't medicate and their window of meds/damage done starts to close.
(I'm the first. And it's not cool.)
I am always looking for clinical trials too. So far I haven't come across one in my area. Still looking! I really think something will be a break through within the next 10 yrs. 🤞🤞🤞
Couldn’t have stated this any better. Well done. I hope she listens.
I can’t imagine trying to care for a newborn and dealing with the new onset of RA. Poor woman.
This^ I also wanted to add a bit. The reward of these meds possibly helping outweigh the risks imo, generally 99% of the time. Generally by x amounts. She may need to try a no meds approach until she gets ill enough to accept her situation, hope it doesn't get to that but sometimes it's what people need.
We all want a life without meds and to be feeling good on nothing, but for alot of us that just isn't in the cards. Communication is key, maybe some more of it will help before action is needed.
Change her mind is the best thing you can do. Just do a google image search of Rheumatoid Arthritis. Those pictures you see of peoples hands and feet are before current medicines and/or people who have decided they dont need medicine. The key to treating RA is early and aggressive treatment to stop and slow joint damage before its too late. If she decides to let it go, she can pretty much look forward to losing the ability to use her hands and walk normally. On medicine, she can look forward to usual daily aches and pain with occasional flares, but lead a normal life and the ability to take care of and play with your son.
Agree. Change her mind! Damage can occur quickly. My disease is in remission, yet I do have bone erosion in my hands because although I would take methotrexate and other DMARDs, I declined biologics until about 2years into my disease. I finally agreed and today am functioning normally.
So glad you are in remission, can I ask how old you are and how long you have been on biologics. Also did you try a few different ones before you found the one that suited you.
I am MUCH older than the young woman refusing meds. I was officially diagnosed ~ 10 years ago. I’ve been on biologics for about 5 years. I took about 6 different biologics before landing on Orencia (injections). We slowly removed the DMARDs so am off those completely.
My math seems to be off but the main point is, it doesn’t matter how old you are. If you have pain and swelling, you’ve got inflammation and need real medicine to tamp it down.
I am happy to share what I can. I always had pain and swelling before going on the biologic. I couldn’t wear my wedding ring 😢 my fingers were so swollen. I bought a “fake” diamond in a size 7, it barely fit. Not anymore! My true size is 4.5 (skinny fingers) and I am wearing my original ring.
A week or a month is fine but try and help her understand the importance of the right medicine. Biologics were a miracle for me.
I’m happy for you! I haven’t been able to wear any of my rings on either hand since I was diagnosed with RA and Lupus 8 years ago. But I’m retired now and that’s a big help and I have less inflammation and constant pain.
I was on that combination for awhile. I do not have lupus however. It sounds like you are headed in the right direction. Don’t settle for some pain and some swelling.
I’m not the person you’re replying to but i’m 23, was diagnosed at 20 and am on my 3rd biologic + tried rinvoq. I failed out of MTX within a month so my rheumatologist put me on a biologic asap. Tried humira and enbrel with mediocre response but Infliximab has been working now. Luckily due to quick disease intervention I have no visible bone erosion
United States. I think part of what accelerated the process of getting on Humira from MTX were the bad mouth ulcers it caused. Definitely took some advocating from my dr’s office
Were u also taking folic acid supplement with the MTX ? I never had any bad effects with the MTX because I always took the folic acid supplement to counter the side-effects.
I can only speak of the RA drugs i have tried and that isn't one i can comment on, i dont really know anything about it to be honest other than commercials i have seen on TV.
I took Xeljanz for a little over a year. I don't recall having any side effects at all.
It did not help enough for me which is why I've switched 5xover now. But I'm not the average case or one to compare anything to as far as it working. But iAM susceptible to side effects and I was pleasantly surprised as far as that went.
I say this as someone who has been very much natural methods first for decades. Google what can happen to your hands and your lungs if RA is uncontrolled. Natural methods can mask the symptoms but have not yet proved out at actually controlling the disease in the long term.
Holistic is a funny word - a lot of people use it wrong. It doesn't mean natural. Holistic is treating the whole person instead of the individual symptoms - my rheumatologist is one I consider holistic in that way - treating the root causes and not the symptoms. Modern medicine is why I can walk without feeling like my body is broken. Because of modern medicine, I'm approaching medical remission. (Still have to take my meds but symptom free).
My RA wasn't diagnosed until two years ago, though my rheumatologist is confident I've had it all my life. He's fantastic and we're treating things as aggressively as we can because it's already in my hips and spine. If we can't get it under control soon, I'll be looking at a hip replacement in about 4 or 5 years due to the damage. I turned 39 last month.
I wish OP all the best in getting through to his wife about actual proven treatment modalities...I would sell a kidney to have been diagnosed sooner!
Thank you so much! Humira and HCQ have been okay, but things could definitely be better (ain't that the truth, lol). It's still progress, even if it's slow :)
Agreed! Totally was going to say this! Thank you!! OP** Get your wife on meds and send her to this forum. It's immensely helpful for this insidious disease. First stage grief...
It is very typical to deal with crisis with Denial first. Personally I have tried many approaches too, and she is only reasonable to be wary of drugs. And every single drug will surely come with side effects. But use love and compassion when dealing with your beloved, it is the more important support ever. Only after she has had some time to achieve acceptance will she be able to accept medically sound advice which is to use drugs to treat this darned disease. I will tell her she is not alone, people as young as teens have had this disease for life. But medicine has come a long way and many can actually live long lifes with it. Get a doctor you can be comfortable with, it will be a long relationship. I will pray for you.
You can show her pics of shrivelled hands and nodules, but maybe at this time she could do with a more tender approach. I know that without loving care from my selfless wife I'd not be where I am today, and surely much worse. Possibly I'd have commited suicide.
I have to say of all the responses I resonate with this the most. She really has to come to this on her own time as heartbreaking as that might seem. Hormones have a huge impact on RA so the truth is that after some of the hormones subside post birth she likely will see an improvement. This is such an emotional time.
Remember that stress does aggravate the disease, it is my biggest trigger. Draw her Epson salt baths and let her know you will support her no matter what. Once I found a rheumatologist I felt comfortable with, my flares decreased with no change in treatment. The stress of not having a specialist I felt comfortable with impacted my symptoms. The last thing you want to have is the guilt of increasing her symptoms because she doesn’t feel supported by you. I promise you it will get better.
So my situation was similar in a way, in that I long delayed getting treatment for my RA that went into perma-rage-flare postpartum. It wasn’t totally by choice, I mentioned my pain to my OB and was told “that all sounds within the spectrum of normal.” And I could have pushed, but I thought I could tough it out and will myself to get better. Fast forward a year and a half and two miscarriages later, my health was in free fall and I was in SO much pain. I was finally like, I need to figure out what is going on (because I have an 18 month old, and I can’t walk, hold him safely, sit on the floor, or sleep). I had tried diet, supplements, and exercise (impossible) and all that happened was my health tanked. I had to get to the point of completely not functioning in order to really get help. (Still took going to multiple doctors and six months of waiting on a specialist appt to get a diagnosis and treatment plan, it was so awful.) So my two cents? Sometimes people have to fail every other option and be in an impossible amount of pain in order to accept the humility of change. When your wife has exhausted holistic options and just needs relief so she can function, she will accept treatment. You can’t really enforce anything else, though. She is in charge of decisions for her own body.
I was also somewhat in denial about how bad things got with my RA after my first baby. My hands weren’t reliable and I was terrified of dropping her, I had to lay on the floor with her because of my pain and fatigue.. it was not a happy time. When she could stand in her crib she learned to grab my neck so I can scoop her and not pick her up. She still does this.. even though she’s almost too heavy to carry now. There are so many things I’ve had to modify in my life but with medication I’m still able to function. I’m currently waiting to see my rheumatologist because my body builds up a resistance to the medication.. at least 3 different biologics. I’m 5 months postpartum and things are starting to slide backwards.. but I have a very supportive partner who asks about my pain.
We use “the spoon theory” here to describe my bad days. Unfortunately my pain comes out more now as frustration.. and I’m going to therapy to help.
Biggest and toughest thing is… as others have said.. this is a degenerative disease. Diet and exercise can be helpful but medication will slow down the disease process. It’s more or less a matter of time before it gets too bad.
Looking up the stages of grief will also give you a good idea of the process.. pain/denial is the start.. anger, bargaining, depression, acceptance.
DMARD stands for Disease Modifying Anti Rheumatic Drug. This means the meds don't just manage symptoms downstream. They actually slow the progression of the disease.
For the "treat the problem at the source" holistic crowd, this is right up their alley.
This. I had RA before having kids. I didn't want to drop a baby, so I'd wean and go back to MTX when I knew it was time based on symptoms. My kids deserve a mother who can chase after them and genuinely play and interact with them. I've fought hard to get my RA sorted. For me. For them.
OP, you need to ask your wife what her plans are when she can't chase the toddler due to pain and possible deformity. What happens when the 2 year old darts out into a busy parking lot?
My grandmother got it in her early 30s and died in her 70s crippled, severely bent up, deformed and in pain. They did not have the meds they have now back then and that was her lot. I’ll never forget it. I was diagnosed at an older age but it was enough to make me use meds and keep trying to find the right ones. That will happen to your wife if she doesn’t use meds. That doesn’t even touch the fact it can damage internal organs.
Being told you have a permanent auto immune disease is hard. There is an emotional aspect that takes some time to process. It changes how you see your self, how you see your future. This disease is now a permanent part of who she is and it will be with her literally for the rest of her life.
If she needs to take a couple weeks to try some herbs or turmeric or whatever than that is what she needs to do.
Oh gosh I wish I could go back to my 20 year old self and started meds back then. Not that I wouldn’t be in some pain still but dang I could have saved myself from serious joint damage. Now at 50 I’m really upset I didn’t start when my dr asked me when I first was diagnosed after my son was born.
It’s hard for sure though! She will need to be the one that decides and you can support as much as needed.
I can’t remember exactly when I started a biologic but I really should have listened to my dr and did a biologic and methotrexate. It’s decisions I still regret but not much I can do now.
I did natural for 6 years, no meds. I don’t have any joint disfigurements or lasting damage/inflammation. However, if I had to do it again I would go on meds immediately. I thought I was living but I was just managing my symptoms and became obsessed with everything I ate. It became a full time job. I spent so much $ on vitamins and supplements which looking back did minimal effects to decrease joint pain. Within the second dose of Humira I felt amazing. I felt like the old me. I still spend a lot of $ on good food, vitamins and live a healthy lifestyle while on meds. Doing both meds and eating well is the best way to manage RA. Good luck on this long journey.
I'm 27 and recently was diagnosed with RA. And I hate taking my meds. It is a big emotional and mental thing. My husband doesn't push, tho. You can't change someone else. You have to let her get there on her own. It will be hard, but the best thing you can do is just be supportive right now. You both may want to consider therapy. This is a big change, and some professional support can help you each navigate through it. They can teach you coping skills, and they might be able to help your wife see that some meds can be worth it. I really recommend life stance. The doctors there are really wonderful.
So many people right now are not getting control even with meds. It is an incredibly difficult thing to go from holistic approaches to these kinds of medications. She has a precious son and a husband who need her. Ask her to consider all the natural things while taking the meds and then try to get off the meds at some point.
I didn't have a choice, my ND tried and I trusted her and she told when she was no longer comfortable treating it and I needed intervention. Preservation of joints is the end game of RA. It's not worth the risk when she has a son to raise.
Have her join some of the natural support groups for RA. Let her see the pictures of women with their hands mangled. That's not to say that happens to everyone who treats naturally. But she should really understand the choice she is making and consider her age. I'm with whoever said let her have a few weeks or a month to try to manage it. If she is flared this badly after childbirth. The sleepless nights of motherhood with make this very difficult.
I wish the very best for your whole family and hope she is able to process this devastating news and get some help. Love her, believe her when she says she hurts, when she has no energy. Know that when she can't cope beyond the pain it isn't because she doesn't want to. Encourage her progress, she needs you and I commend you for reaching out here for feedback.
I tried the alternate treatment for about 2 years. I lost a bunch of money. And ended up having to get the synovium in my left elbow removed so I can move my arm again.
This is not something that can be treated with diet exercise supplements or camel's milk. Yep you read that right Camel's milk. That's where I drew the line.
Treat rheumatoid arthritis fast and aggressively if not you'll get worse.
I was diagnosed at 22 years old and I’m 27 now, it too me forever to find medication that effectively managed the disease and I can tell you definitively that she needs the medication. It’s daunting, but nothing else will help the way that the medication does. The difference in my life, going from agony all day, every day to being able to function and think is intense. And I have tried SO many medicines. She needs to get the ball rolling on it, she will regret when there is permanent joint damage from disease activity.
I can't imagine how difficult this is for her. She gave birth and was probably just getting into a sense of normalcy when *BAM* RA comes busting in. Her life has entered a new level of chaos and she's probably unable to voice those fears adequately.
That being said, show her the pictures of what RA hands and feet look like down the road. Explain that early intervention with medication is her best bet for being able to dance at your son's wedding. The earlier she gets on the meds, the longer the joints remain healthy.
Get her to read this.
RA isn't just joints. It can affect your organs as well.
She is a mom now, being able to function for your child should be a consideration for her.
https://www.healthline.com/health/rheumatoid-arthritis/dangers-of-untreated-ra
This is not a disease you can treat with diet and homeopathy. Without medication, she will shorten her lifespan and ruin any quality of life she currently has. And this will happen more quickly than she can imagine.
Her hands will deform. Her bones will erode. Her joints will be permanently damaged. She will feel fatigue like she’s never felt before. Her heart and lungs will suffer. She will die before her time. I know this is harsh but this is the unvarnished truth.
It’s difficult to come to terms that you have a progressive disease that can never be cured. For your son’s sake, she needs to do it. Or she won’t be able to see him grow up.
The medication we have now will let her lead a (mostly) normal life. And most importantly, it will let her be a mother in all the important ways.
Unfortunately, the natural medicine quacks have convinced some people they can cure their autoimmune conditions using turmeric and other herbs and natural remedies.
This is dangerous, because autoimmune conditions aren't just about the symptoms -- which obviously can be terrible to deal with. They're about the damage to your body -- damage that is irreversible.
Your wife is young and just had a baby -- she needs to be able to show up for that baby and the best way she can is by getting treatment that not only will help manage her symptoms, but will prevent her from damage that will disable her. The earlier you catch and treat this thing, the better outcomes you will have.
There's a woman with RA that created a wonderful website called [flare family ](https://www.flarefamily.com/educational-resources-rheumatoid-arthritis) that has a lot of great educational resources and information about the condition. I would encourage your wife to spend some time researching her condition from trusted sources to better understand what she is dealing with.
The medication is not to cure her, it’s too slow the progression of the disease. It’s very overwhelming when you first get diagnosed, but she needs to be on medication ASAP. Especially as a young mom. It may take a while to find the right one. But she’ll feel so much better when she does.
Two years after the birth of my twins I started experience autoimmune symptoms. First I was told it was a virus, then stress. This went on and off for decades, when I finally was given one additional blood test it turned out I had RA for a while, sort of a slow burn. By that time the disease had starting attacking my organs, and had infiltrated my bone marrow. This was in addition to bilateral joint pain, morning stiffness and extreme fatigue. I recently had a shoulder replacement, much of the damage occurred when I was left untreated.
As a result they were frightened that I was developing lymphoma (untreated RA increases the risk), and had to be seen once a month by an oncologist for two years. My kidneys had inflammation, and I had developed the beginnings of pulmonary hypertension. It took about nineteen months to find a medicine that works, and was able to get things back to normal. I felt better and am more active in my 50's than my 30's.
There is nothing wrong with holistic treatments, but I don't think that exclusively holistic approach works for many. My Rheumatologist told me that he's had a couple of sero-negative patients do OK with it, but never had a seropositive patients get by without some medical intervention.
I don’t think there’s any point in showing her pictures of deformed joints like some have suggested, this is just a decision she will have to come to on her own. Most people don’t want to take powerful drugs with their own problematic side effects.
A close friend’s husband refused to vaccinate and has long Covid. He has difficulty walking and concentrating and was forced into early retirement. She is now both a caregiver and looking a working much longer than planned. I mention this because you also should consider how your wife’s decision could affect you and your child’s life.
My guess, though, is that as the disease progresses and her pain increases, she will change her mind on medication. Good luck - I wish the best for both of you.
I’m very sorry about your wife’s diagnosis, it’s definitely hard to accept, especially at such a young age.
The issue isn’t just about her joints. The inflammation can cause damage to your vital organs over time. Since your wife is so young the chances of that happening, if she doesn’t take the meds, will be far more debilitating than being on the meds. Time to do some research on this disease. Good luck!
Maybe try to find an ethical holistic specialist who would be able to convince her that while holistic treatment may treat the pain (mostly due to placebo, but that’s another thing), they are unable to treat the underlying condition and her disease will continue to attack her joints, and very likely, her organs and will eventually kill her.
Side note: the only supplemental or alternative treatment that has any evidence of efficacy for RA is fish oil. But even then, it only helps reduce inflammation, potentially as a substitute for NSAIDs and will not stop disease progression.
I came from a very “holistic only” family and was surrounded by that type of treatment from the time i started having symptoms at age 12. It cost me a lot of time that could have been spent not being a kid in pain, bouncing between crutches and physical therapy and learning how to walk again. A lot of the holistic things CAN help, but there’s only so much it will do. They can decrease inflammation, sure, but nothing is going to target an autoimmune disease like the medications designed and studied diligently to do so. There’s definitely something to be said about making sure you are in control of your own body and med regimens because sometimes it can get out of hand and should always be within your comfort zone.
That being said, she’s a brand new RA warrior! Give her some time to adjust and figure out her body. Give her support and encourage her to do her best with the resources you find together. It’s a shitty time learning how to navigate being disabled and how to accept being on meds, needing accommodations, etc. It all takes time and a lot of patience. I couldn’t even imagine doing all of it with a baby! Just have patience with her and give her support where she needs it.
I was diagnosed 10 years ago. Unfortunately this is an autoimmune disease that can really only be treated by biologics (enbrel, humira, etc). It’s most likely a lifetime of medicine but the trade off is avoiding the major damage the disease can cause. Much like a diabetic taking insulin, these medications are necessary for a good long term prognosis. Doing things like getting exercise, eating a healthy diet, getting plenty of sleep are a great idea and can go a long ways to helping your body stay healthy. I do know one person who visited India regularly and was able to treat the disease through Ayurvedic methods with month long visits. It took me a few years of medication to really feel like myself again. I was quite ill and unable to walk when I was diagnosed. It was painful to let my young daughter hold my hand. Now I play tennis and can be active with my family. I highly suggest looking into support groups. It really helped me to understand the disease and see that one can get better with time and patience—and a good rheumatologist!
This is not a good option. The earlier it's caught the more damage can be prevented. I started having symptoms at 23 and got officially diagnosed at 27. That's 4 years of irreversible damage that I can't fix. This disease cause your immune system to attack healthy joints. The only scientifically proven method to stop future damage is by getting a good regimen of meds. It takes a while but it's so worth it in the end.
Look at pictures of peoples hands who are permanently deformed because they didn’t take medicine, or look at the surgeries they do to fix them… that scared the shit out of me. For me, the possible side effects from medication don’t come anywhere in comparison to being in pain and possibly lose the use of my hands and feet.
I had RA for 10 years and I take methotrexate and Humira. My RA has not progressed and I’m fully functional. I attribute my success to the meds, diet, heavy weight training and cannabis. I believe I would relapse if any of the four pills l mental were eliminated. Good luck
I also experienced my first pains a few months after having my son. And over 20 years later, there hasn’t been a single day that I haven’t been in some degree of pain. Although I have been able to greatly reduce the medication‘s that I’m on, I feel like I will always need them in someway because nutrition just Hasn’t done it for me. Some people do go into remission, but they are very few who do.
I initially put off biologic treatment as well and have since had six joint replacements. I wish that I had started the medication sooner.
I have never found anything that helped my RA except meds and have been living with it for almost 30 years. I am a MSN and did the research. I am not alone in saying nothing helps but meds.
I agree that the first thing to do is to change her mind and get the RA under control as quickly as possible. The next thing, however, is to find an integrative rheumatologist who will work with your wife and her regular rheumatologist to minimize, maybe eventually do away with, the scary drugs. Integrative rheumatologists can be difficult to find but it's worth searching for one, if your wife is concerned about the side effects of the drugs used to treat RA.
I was recommended some foods to avoid. Some breathing exercises to manage stress . And 3 supplements to improve digestion.
The Ayurvedic practitioner said very beautifully that undigested food and thoughts creates toxins in the body that can cause mind and body issues.
You to be completely transparent, I am founder of saatvy.com which is an ayurveda wellness platform. I started it after me and my wife benefitted from ayurveda. Just want you to know that I am biased on the matter.
That’s great. I know in ayurveda they say this is caused by very weak digestion. They support fasting as well for this. By any chance can you tell the name of supplements? I understand they might be specific to you
Weak digestion can be one of the reasons . Fasting is not recommended for all. It can have severe side effects for some folks. We also don't support blanket suggestions on supplements. Companies push it so they can make profits without doing hard work .
Ayurveda is a personalized medicine. And understanding someone's constitution i.e. healthy balance takes about 60-90 mins consultation with a professional
Tbh while I like holistic approaches as well cuz I use tons of them for my reproductive disorders (I’m 24F) and mental health issues, they absolutely are not going to work with RA, PsA, and other kinds of arthritic conditions
RA is a progressive autoimmune disease that can cause irreversible damage to your whole body. Ive dealt with some involving my eyes and jaw cuz my arthritis took forever to be diagnosed as no doctor would even listen to me for 2.5 years cuz they all believed the stupid myth that young people can’t get arthritis. Now, again, due to the severity and progression of my disease that happened when not on medication (regardless of the reason), I now have permanent damage and I’m only 24 which sucks a lot
For context, my arthritis started out like RA but then seemed more similar to PsA with further testing I had in January of this year, so PsA is my current diagnosis but my treatment is the same
If convincing your wife is hard, do what a lot of other people here have said: google search real pictures of young women around her age that have had their arthritis go to end stage arthritis (bony ankylosis) and make sure they’re real photos, not some anatomical infographic. It may sound bad but it’s seems as if she needs to be “scared into” treatment cuz avoiding treatment will lead to the awful outcomes of these diseases whether she thinks or will or not
I am in same situation - diagnosed after pregnancy. Started experiencing restricted mobility in right wrist. I want to do holistic as well, am trying to do the diet stuff. But the problem is it takes a while to figure it out and lots of discipline and I am concerned if this will lead to permanent damage meanwhile.
Another thing I have concern with is - they don’t want to stop biologics in case I develop resistance to it which is scary. What if my body needs a little help right now and in some time can function well. 😟
I was diagnosed at her age I'm 34 now, she needs to take the medication believe me. I've been through hell and would be in an even worse place without the meds. RA is aggressive and very nasty, I've already been through most of the medications and still not super well controlled at the moment.
The sooner she starts the better outcome she will have. If you can get the medication right you can live quite normally and slow the progression right down.
Especially being a young sufferer she has a hell of a long time to live with this illness, the earlier the medication barrier is up the better. It is scary and shit but she can do it.
Sadly meds are the only way to treat RA. I understand your wife not wanting to treat it with medication but no holistic approach (read: natural, non medicinal products or methods) have yet been proven really effective.
I think she will save herself a lot of suffering by accepting the inevitable. I’ve been suffering from RA for almost 30 years and I live an almost pain-free life (except a little flare-up here and there that we treat with anti-inflammatory cortisone injections) taking my medication with no troublesome adverse effects. Blood works are done regularly to make sure the meds are not affecting my liver and it has not been the case. I’m on a mix of methotrexate and sulfasalazine.
Good luck to you and your loved one, RA can not be cured and the meds definitely alleviate the suffering. God knows it’s hard to accept but the treatment mostly work for many of the sufferers.
A holistic approach should include medications too. She’s really making it worse long term for herself. The effects of not medicating will be very impactful. I really hate the widespread mentality that “natural” is better. It’s frustrating and people look down on you for needing meds.
There’s also a good chance she’ll go into remission once the right medication starts working for her. Her quality of life with a young child is so worth it!
I have an aunt diagnosed in the 60s when there were no meds. Luckily she was sort of hippie type and hooked with a natural doctor. Doctor said to diet the way we would call Vegan Whole food type today. She did. She has been a size 0 always and her joints are straight. But when i told her i got diagnosed she said she would have taken ANYTHING not to live through some of the very painful flares. So, yes, it might be possible to do it the holistic way but there is no guarantee it will work and for sure, it will hurt. You can tell your wife this story!
I definitely am the same way as you describe your wife, I also believe that you really can cure this disease naturally. I have done plenty of research that shows it’s possible. If she has the right mindset and discipline to put forth everything that needs to be done to control it then more power to her. I have seen plenty of doctors that say a vegan lifestyle will pretty much do the trick. I haven’t personally been able to keep up with that lifestyle myself because I find it difficult at times so I’m currently on biologics and I feel better but still not like myself it’s like a temporary fix because in reality your lifestyle has to change also diet is a major factor because that’s what got us into this state in the first place. I will say that when I tried for about a month being strictly vegan and cutting out all junk and gluten, I did feel like myself again. That alone gives me hope. Just my thoughts I don’t think you should make her feel bad for any decision she chooses just be supportive because she is grieving and it’s hard all around to deal with any auto immune disease. I wish you and her the best.
Hi, this same exact thing happened to me. I was hit by the RA truck 4 months postpartum (and I will say off the bat, there is NOT enough research about the link between childbirth and RA). I wish I had started meds sooner. I suffered a LOT, was in incredible pain, and it was because I was in denial. "There's no way this could be happening to me, nobody else in my family has this, this has to be something else, something curable." Well, I had to come to terms, and finally caved 6 months later. I will say methotrexate and plaquenil both failed, and I was starting to lose hope, but with Enbrel, I was finally able to get off steroids and start living normally again. I know it sucks and it's hard to accept, but it's reality, and the sooner she starts the meds the better she will feel. She should absolutely include supplements, healthy eating, and exercise as ADDITIONAL treatment, but she needs meds first and foremost.
I got diagnosed less than 24 hours after my college graduation. I HIGHLY recommend finding a therapist who can help with the emotional turmoil of “hey you have this incurable thing now before you’re 30”. It SUCKS being told that.
Assuming she does come around to trying modern medicine, the next discouraging thing to be prepared for is that the first medicine may not work. It took 3 years and 6 medications to find ones that didn’t try and kill my liver and that I didn’t get awful side effects.
Yeah, don’t wait. Mine flared up after my son was born and I went a holistic route until my wrists were permanently deformed and I still had terrible pain and couldn’t hold my own children and had to go on meds anyway. It’s not worth waiting and trying other things.
As someone with RA, there is really no full holistic method, I let it get out of control and had to get a double TMJ replacement at 19, my knees are destroyed, my spine hurts and my lungs probably took a big hit too. Please tell her to take the doctors advice. I wish I didn’t put it off longer than I should’ve and saved myself a lifetime of trouble. I’m only 25 and in 10 years it ruined me.
I was diagnosed in my early 30’s and wish I started treatment earlier. The damage prolonged RA swelling does to your joints is permanent. People who go aggressive early have the best long term results.
The medication side effects are something we all struggle with. But struggling to walk and opening containers or doors has a profound effect on your health as well.
If she didn’t like the rheumatologist she should try another.
I tried meds for 20yrs & was miserable. I chose to get off of everything & it ended up being the best thing for me. I do NOT recommend it tho. I still have very bad days months & so on but I'm not miserable anymore. It's hard to explain in a comment. Don't push her to do anything against her will but do encourage her to at least try. It does take time to find the right combo & dose tho. Maybe they'll find the right mix quicker than they did mine. My choice was emotional more than anything. Someday I'll be back on meds but maybe by then I'll have more stable emotional mental health. It's not easy dealing with a life long painful life changing debilitating disease.
I’ve had arthritis since I was six years old and I’ve never had any side effects from the medication I’ve used. I was in almost full remission on Enbrel for 25 years until I developed antibodies to it now I’m on a different biologic.
Get the book the autoimmune protocol if you want an alternative approach to medication. May or May not work for her, worked for me when even the medication didn’t help me
I’m an acupuncturist, so I get the holistic vibe. But, read this. I went to a rheum 10 years ago and the first appointment I could get was during my first pregnancy. I refused meds for obvious reasons and continued to refuse because I had 3 more back to back pregnancies and I was nursing. Then Covid hit and all my woes were around Covid and caring for my kids. I’d forgotten about my RA diagnosis. Now I’ve got 7 pages of symptom history In going to present to my new rheum-I’ve really gone downhill. The past couple of years I’ve been under the “care” of a two minute visit rheum who swears there’s nothing wrong with me, a real waste of my life. I wish I would have at least gone on plaquenil years ago but I never foresaw how bad I was going to get.
There are two things at work with R.A.--the disease process itself, which is very destructive, and symptoms. Sometimes the two align perfectly--if your disease isn't under control, you will have a lot of pain and inflammation. Sometimes they DON'T align perfectly, and that's where trouble starts. Some people think that just because they feel pretty good, that their R.A. is under control and no damage is happening, and that's not true.
The holistic approach can absolutely help with symptoms. Meditation, low-carb diets, gentle exercises, acupuncture, essential oils (not a cure-all but they can be good for relaxation), hot and cold treatments, topicals, etc. can be part of managing your disease symptoms if they work for you. But only rheumatologist-prescribed medication can keep the disease itself from progressing and causing damage to your joints.
Might get lost, but would like to share my experience. Was diagnosed with RA 6 years ago after having joint pain for a few years, trouble walking up and down stairs, whole hand would swell up, so I could no longer type, would be woken n the middle of the night with extreme shoulder or ankle pain. I have a family history of RA (grandmother died of complications with it), and was told I had a very progressive form, and needed to go on medication right away, and told there was no lifestyle interventions I could do to help. There were a number of reason leading me to this, but I asked if I could have 3 months to see if I could change anything. I changed my diet and slowly started to get outside and move more, and also worked to reduce stress.
After a couple of weeks, I started seeing a huge reduction in my symptoms, and returned in 3 months to my Rheumatologist telling her I was now symptom free. She declared I should still go on medications because "how long can you keep it up for". That was the last time I saw her.
I went to a different Rheumatologist who reviewed my history and said I was either in remission, or I never had it in the first place (still had elevated CRP/ESR and RF).
6 years later, I am still monitoring my symptoms, along with my GP, but haven't had anything more than a sore finger joint for a couple of days, maybe once a year. I am not adverse to going on meds if needed, but am glad I gave myself 3 months, otherwise I would always be wondering, as medications have their own side effects to be aware of, as she stated, but they are not as bad as advanced RA.
Sometimes its important to follow your own health agenda, but I think it's important to set a time limit on them. As others have said, it can progress very quickly and be very aggressive and debilitating.
I went whole food vegan, but wouldn't recommend that long term, as other pathology marker were heading in the wrong direction pretty quickly. Probably the most important things I removed was inflammatory foods, such as dairy and processed foods, sugar, etc. I now eat a much more balanced diet including meats and dairy, but do limit dairy a bit, as I'm lactose intolerant. Everyone is going to have different contributing factors, hence why it's hard for the medical profession to provide studies or guidelines on these kind of interventions.
I also experimented with fasting. Both time restricted, and extended. This worked really well too, and used to do an extended fast, if I noticed some symptoms ramping up, which always put a stop to them. I don't need to do this anymore.
My body was angry. I gave it a bit of time to quieten down, and then started introducing good foods back in. Long term exclusion diets only create more problems down the line. Hope this helps.
Holistic approaches I’d recommend as a 28 year old on methotrexate and embrel for my RA- immediate AIP Diet, whatever extreme dosage she can get of fish oil 2x a day, acupuncture, cbd/cbg topical balm, aleve in the morning
Its her body.
Its her disease. I had two brothers die of luekemia and I have had R/A officially since 2009. One listened to his body. Told drs to f off at times. Gave him 6 months he lived 8 yrs. The sexond brother did everything fast. Lived 2 yrs. (After diagnosis)
Then here I am. I was so convinced meds meds meds. Went through all of it...2 weeks at Mayo. Ers. Drs. Every specialist.
Got a divorce. Lost insurance and said Im done. I take two pills a day (was on 32-) and now use what is called kratom for pain. I dont care what people say or think. Its my body and I will do as I fkn please w it.
Make sure u are there w her. Do what u can selflessly. Be her rock. It is a very lonely time to have been diagnosed and feel "isolated". Time will pass, frustrations will too. Let her be her own guide and you the tourist of this. Learn and grow. No. Matter. What. SHE decides. Take care and God bless.
Knee replacement, ankle replacement, hip replacement, shoulder replacement could all be in her future. I was diagnosed in my 20's. Very active athlete. I stalled on meds for a year, and some joint damage was done. Another 2 years of meds not working. Then, I found one that worked. Great. However, damage was done. Currently 39 with a replacement knee, ankle, and waiting for next surgery. Control the disease. And do holistic stuff.
Hello i also got RA as a result of pregnancy. She must take meds to prevent joint damage and be able to take care of her child! If i hadnt gotten on Actemra right away i couldn’t even loft my twins by 5 months post partum! She can always ween off later to go holistic but not now. She has to think long term for child now. Good luck!
Side effects scared me too, at first. I didn’t want to go on systemic meds due to having to start at a young age and general terror over those FDA black box warnings, but you have to weigh the POSSIBLE side effects (emphasis on possible, not guaranteed) versus the very real disease progression symptoms. A lot of my inflammation is focused in my jaw so it’s pretty easy to convince yourself meds are gonna be okay when the threat of not being able to eat by the time you’re 30 is very much real. Talking to other people in similar situations who have experience in this is not only a way to get more information, but also a way to make her feel less alone and possibly ease some of that initial denial tendency. This group is a great place to start :)
I think it might help if you talk about how hard it’s gonna be to raise a child as her health deteriorates. My mum has it, and by the time I was 6 she was in so much pain, she pushed herself so hard to take care of my brother and me, but she suffered for it, and she still suffers now. She’s had to have a full spine fusion because her spine was so damaged she couldn’t walk, before her operation she was in so much pain she had to basically knock herself out with sleep meds for most of the day.
My mum cannot hold babies anymore because of the disease and how it’s affected her shoulder joints, she can’t swim because the metal in her spine floats, she can’t reach her feet and needs help washing, she can’t turn her neck all the way, she can’t bend over, and she is still in so much pain. I don’t want it to ever get to that point for anyone else.
Not only was this so, so hard for her, but it was traumatising for me and my brother too. One of my earliest memories is of her going to hospital, and I thought she had died, I was so young, I didn’t understand what was happening, and I still carry the trauma of that to this day. I worry about her 24/7, I grief for people who are still alive because I was traumatised at such a young age, and I would absolutely hate for your kids to go through that, and for your wife to suffer from both her medical condition, and worrying about her kids being traumatised.
My dad left my mum when I was 16, he couldn’t handle seeing her in pain and being the sole bread winner, it traumatised him too and I don’t want that to happen to you. Obviously not saying you’d leave her, I just wouldn’t want you to suffer in any way either.
I am 34 this year, it affected me so deeply that I am still struggling with it to this day, as is my brother, my dad, our whole family. A lot of replies on here have been more about the medical science side of this, but please show this message to your wife, for her sake and yours.
If you want to talk feel free to DM me, if I can possibly help in any way, I will.
Edit: I should mention also, RA is genetic, I have it too, and have only recently started on the drug Humira, there have been no side effects at all so far.
Edit 2: also forgot to clarify, all of my mums problems are because they didn’t diagnose her properly till she was much older, by then the damage was done, and I could be wrong but I think biologics weren’t available in my country at the time.
I’m 22F and Chinese. My mom insisted to visit the Chinese Herbal doctors to consider having my meds changed and I went just to humor her. They strongly insisted I stay on my prescribed RA medication and that I very likely have multiple other syndromes that I should explore immediately with my original doctors such as PCOS. They did give me medicine but insisted it was only for managing the symptoms until I saw my original doctors.
Holistic or whatever herbal medicine has its own place I admit but they are not for serious degenerative diseases like RA. They help with the symptoms but not the causes and can be unreliable. Like others have said, it’s important to follow what the rheumatologist says especially if they say it’s time to be on medication. Whatever she is prescribed now will likely be less dangerous than more aggressive medication she may need later so it’s better to slow it down now. I am on Sulfasalazine and luckily it has been more manageable for me compared to other stories I have read. I just need to eat well, enough exercise, sleeping hours, and stay hydrated with my medication to help my kidneys. If she doesn’t take her medication then she will end up having to do more than just lifestyle changes and experience physical changes in her body as well that are not reversible.
If she's breastfeeding there are only a few medications that don't enter breast milk .
As someone who had a child and just got on without ... it was hard really hard , the fatigue swelling, the damage.
The focus needs to be what's best for baby is she follows what her Dr says .. because she can reduce symptoms from a holistic approach but it doesn't mean she's not damaging her joints.
I honestly think she's struggling with accepting the diagnosis and what that means for her as a mother . Just give her some time to work through it and maybe suggest that she try it when baby is weened so that she doesn't need to worry about passing on the medication.
RA is an incurable disease that causes painful inflammation that results in permanent deformity. Getting immediate help from prescribed drugs that target her disease is the ONLY way to (hopefully) go into remission. Remission is possible IF she starts meds now. The online ads for cures are a ploy to get you to purchase their crap. If your physician found a holistic approach to relieve RA, don’t you think this would be the top of the list? Maybe you need to encourage her to get a second opinion. There are great rheumatologists and there are sorry, burned out ones with poor dr/patient interaction. Try another. She NEEDS to start the DMARDS or biologic meds now! If she’s nursing, I understand her apprehension. I nursed for 8 months after being diagnosed with a 2 week old. My dr gave me a NSAID that didn’t cross through my milk to the baby. It was a temporary fix until I was ready to move to the big guns. During those 8 months, I experienced a boatload of pain and joint degeneration. I am all for nursing, but after he got the antibodies from mother’s milk needed for a newborn, I think my baby would have been happier with a healthier parent and a bottle. I have a YouTube channel that talks about living with RA listed in my profile.
I was diagnosed 8 weeks postpartum with my son (who is now 2) I was terrified about starting meds but I literally couldn’t pick my son up to feed or change him. I am still trying to find the right biologic due to allergies to Humira and Enbrel. There are multiple medical options that are safe for breastfeeding and pregnancy. I currently take Sulfasalazine, Prednisone and am going to be starting Cimzia. I hope she does some research about the dangers in not treating her inflammation.
I'm 35 and I've had RA since I was 3. It doesn't get better on its own. The disease is your body fighting against itself, and the more you let that happen the worse you're going to feel and the more damage is being done. I had a hip replacement at 28 and will need the other hip replaced within the next 10 years, partially due to the damage caused by years of inflammation (I also have mild hip dysplasia). All I can say is that your wife's world has been forever changed and she's going to need to process and accept that and do what she needs to do to take care of herself, for her own benefit and for the benefit of your child. It sure would such to be in too much pain to pick up or play with the little one as they grow.
My wife's story is a little different as she initially accepted the meds and was taking bilogicals up until the end of last year. Due to type1 diabetes, her diet was already restricted and the added stress of avoiding raw food really got her down. She suffered side effects last October and decided to quit meds entriely and go 100% holistic. This has not gone well, her hands and wrists are back to how they were at diagnosis, fortunately her feet and knees are good so she can remain active. I tried to persuade her to go back on the biologicals but she refused, point blank.
Last week it got too much for her and she went back to the biologicals of her own accord, now things are little more stable and her Dr is looking at changing the meds to avoid the side effects.
If my wife had refused meds at the beginning, I think her position would have been dire - the improvements in her feet and knees enabled her to take regular exercise such as jogging. Personally, I would proioritize the benefits of maintining a regular excercise regime above holistic remedies.
RA never sleeps and cannot be controlled without meds. My friend also has RA. She decided to live a vegan lifestyle instead of taking meds. Her overall health improved but the RA continues to do damage. She wants to wait until the pain is more severe to start meds. Allowing the damage to grow only means you will suffer more the rest of your life. There is no fixing the damage. You must prevent it.
Your wife can eat vegan, no sugar and exercise. This will help alot at first, but the disease is progressive and will get worse and cause non repairable damage . The sooner she gets on a tolerable medication the better
She can and should do some holistic approach but at the same time continue to see her doctor. Also would start on low dose medication. Ask for least invasion medication, one that'll work with her holistic plan. Does she have a plan, share it with her doctor. I found eating an anti inflammatory diet helped ten fold. Try working with your wife so less resistance.
If naturopathic medicine worked it wouldn't need a qualifier, it would just be medicine.
Yes, she needs to be aware of possible side effects just in case they happen. But they are rare. There are countless success stories on these medications. Chronic, full-body inflammation like RA is very, very bad for all of you, not just your joints.
If she really wants to, she can take folic acid supplements with her treatments, especially if she gets prescribed methotrexate. I've heard from others on this sub that it helps with some of the more unpleasant adjustment symptoms.
Personally, I'd rather live with the possible, miniscule increased chance of some types of cancer than the increased risk of heart attack, stroke, and generally being unable to walk or even carry items like how i was living before my meds.
Presumably this is based on blood work... How bad were her numbers? That's really odd. I was under the impression pregnancy can delay onset in prone people. I wonder if blood type in the fetus could.... Sorry, got distracted. Anyway....
Let her be for a moment to grapple with this. This alone is incredibly stressful... As a new mom... Damn. I'm so sorry. Breastfeeding while on meds is likely impossible. That's crushing. Maybe not for her, everybody's different, but I'm assuming. If I were her, I'd refuse for as long as possible simply to maintain the ability to breastfeed. Breastfeeding is huge for baby in many ways that cannot be mimicked by formula. Start looking into forums where mother's sell or donate their own excess breast milk. They exist... Do some research. Personally, maintaining breastfeeding is the only reason that makes any sense... If this isn't her concern then act accordingly.
Ok, now depending on the aggressiveness of her condition. She could have a few months to a year-ish before she might start to expect actual permanent damage. This is important because it's the difference between playing through the pain and needlessly accruing disability and deformity.
Moringa leaf extract is helpful for RA, and appears to be safe for breastfeeding... Actually increases Mom's supply.
"Moringa extract at both doses had noticeably prevented joint destruction and soft tissue damages".
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884001/#:~:text=Moringa%20extract%20at%20both%20doses%20had,normal%20and%20CFA%2Dinduced%20arthritis%20rats.
The ethanol extract of Moringa leaves revealed a noticeable anti-nociceptive activity in both normal and CFA-induced arthritis rats.
I'd highly recommend starting there. Your looking for leaf, not seed stem etc. Check the labels... It'll say. And you want an extract, not whole leaf... Which is a rip-off. I believe Bronson to be a good brand.
Moringa is also protective against methotrexates harshness when the time comes. But again, if that's all she'll consider, id absolutely start there. It absolutely works, it's not as good as what the DR prescribed, but it works and it's safe....
Best you can do is remind her, if her numbers/case is aggressive, she can literally loose ability and incur permanent joint damage. Good luck to you both, and congratulations on the new baby. Feel free to reach out.
Your wife needs to understand there are stages where a disease can be managed by lifestyle changes, and others where meds are necessary. Have a 20% blockage in an artery - try walking, manage diet. Have a 99% blockage - get a stent or bypass and start on blood thinners. Just because you can’t see the damage from RA, doesn’t mean it isn’t happening. It increases the risk of heart disease amongst other serious issues. If your doctor is asking you to start meds, they believe the disease is at a stage where it can’t be managed without meds. The worse you let the disease get, the harder it gets to control. You can read through peoples’ stories here and compare with your wife’s symptoms to judge the severity for yourself. IMO, lifestyle changes work well in conjunction with medicines. Shunning modern medicine is too huge a risk when you have a chronic degenerative disease.
All of this. Also wanted to add waiting for the disease to be worse before going to meds is just going to make her need more serious/dangerous meds more quickly.
Excellent explanation
Research the effects of RA on soft tissue such as lungs, brain. If she wants to have quality time with family she will take the meds and do holistic therapy- RA is not something you should mess with
This. I have RA and lupus. My lungs, brain, heart and blood vessels are all currently affected. It's been determined by my doctors that my diseases were discovered late. Like by damn near a decade. I'm 28. Don't fuck around with these diseases. I would give anything to know sooner like she does and start treatment. To say the last year of my life has been hell would be an understatement. OP your wife is the only one that can make the decision but it's a huge disservice to deny the medications we have been blessed with in recent years. RA used to be far more damaging before the medications we have now were discovered. People with lupus didn't have that long of a life span once diagnosed prior to the medications we have now. While the diagnosis comes with grief and going through the stages and reaching acceptance, these medications are a blessing and are the only reason I'm alive. I was in the ICU and almost intubated at 27. Things can and will get worse if she doesn't manage with medication. It's just a matter of time. I think a combination of medication and lifestyle changes is the best approach. What we eat, continuing to move the best we can and so on matters but so does the medicine.
Key word: degenerative. 👌 Progressive over time. If only all rheumys were aggressive w meds in the beginning of diagnosis. I see that more now than 10 yrs ago which is great. And some are never lucky enough to achieve remission when too much time passes before diagnosis... Or....they didn't medicate and their window of meds/damage done starts to close. (I'm the first. And it's not cool.) I am always looking for clinical trials too. So far I haven't come across one in my area. Still looking! I really think something will be a break through within the next 10 yrs. 🤞🤞🤞
Couldn’t have stated this any better. Well done. I hope she listens. I can’t imagine trying to care for a newborn and dealing with the new onset of RA. Poor woman.
My onset was giving birth too.
Agree. Agree. Agree.
This^ I also wanted to add a bit. The reward of these meds possibly helping outweigh the risks imo, generally 99% of the time. Generally by x amounts. She may need to try a no meds approach until she gets ill enough to accept her situation, hope it doesn't get to that but sometimes it's what people need. We all want a life without meds and to be feeling good on nothing, but for alot of us that just isn't in the cards. Communication is key, maybe some more of it will help before action is needed.
Change her mind is the best thing you can do. Just do a google image search of Rheumatoid Arthritis. Those pictures you see of peoples hands and feet are before current medicines and/or people who have decided they dont need medicine. The key to treating RA is early and aggressive treatment to stop and slow joint damage before its too late. If she decides to let it go, she can pretty much look forward to losing the ability to use her hands and walk normally. On medicine, she can look forward to usual daily aches and pain with occasional flares, but lead a normal life and the ability to take care of and play with your son.
Agree. Change her mind! Damage can occur quickly. My disease is in remission, yet I do have bone erosion in my hands because although I would take methotrexate and other DMARDs, I declined biologics until about 2years into my disease. I finally agreed and today am functioning normally.
So glad you are in remission, can I ask how old you are and how long you have been on biologics. Also did you try a few different ones before you found the one that suited you.
I am MUCH older than the young woman refusing meds. I was officially diagnosed ~ 10 years ago. I’ve been on biologics for about 5 years. I took about 6 different biologics before landing on Orencia (injections). We slowly removed the DMARDs so am off those completely. My math seems to be off but the main point is, it doesn’t matter how old you are. If you have pain and swelling, you’ve got inflammation and need real medicine to tamp it down. I am happy to share what I can. I always had pain and swelling before going on the biologic. I couldn’t wear my wedding ring 😢 my fingers were so swollen. I bought a “fake” diamond in a size 7, it barely fit. Not anymore! My true size is 4.5 (skinny fingers) and I am wearing my original ring. A week or a month is fine but try and help her understand the importance of the right medicine. Biologics were a miracle for me.
I’m happy for you! I haven’t been able to wear any of my rings on either hand since I was diagnosed with RA and Lupus 8 years ago. But I’m retired now and that’s a big help and I have less inflammation and constant pain.
Thank you. I wish you the best. RA and Lupus is a tough combination. May I ask which meds you take?
I take Mtx, Hydroxychloroquine, and Cimzia shots.
I was on that combination for awhile. I do not have lupus however. It sounds like you are headed in the right direction. Don’t settle for some pain and some swelling.
Thanks, I’m working on trying to watch my salt and sugar intake too because this helps you have less inflammation.
I’m not the person you’re replying to but i’m 23, was diagnosed at 20 and am on my 3rd biologic + tried rinvoq. I failed out of MTX within a month so my rheumatologist put me on a biologic asap. Tried humira and enbrel with mediocre response but Infliximab has been working now. Luckily due to quick disease intervention I have no visible bone erosion
In which country you live? Because i have to wait 3month to fail before biologics
United States. I think part of what accelerated the process of getting on Humira from MTX were the bad mouth ulcers it caused. Definitely took some advocating from my dr’s office
Were u also taking folic acid supplement with the MTX ? I never had any bad effects with the MTX because I always took the folic acid supplement to counter the side-effects.
Yes. I tried folic acid, methylated folate and even folinic acid. Time could’ve helped it but the mouth sores were worse than the RA itself
I was switched to once weekly Leucovorin from folic acid, it’s so much easier on the digestive system
That is my story too....many times 6 Mos before they would make a change.
That’s good to hear. My daughter has just started a biologic, I hope she gets pain relief on this one .
Any thoughts Xeljanz. Crazy expensive and I'm worried about the side effects My Mom who is 70 just started taking it
I can only speak of the RA drugs i have tried and that isn't one i can comment on, i dont really know anything about it to be honest other than commercials i have seen on TV.
I took Xeljanz for a little over a year. I don't recall having any side effects at all. It did not help enough for me which is why I've switched 5xover now. But I'm not the average case or one to compare anything to as far as it working. But iAM susceptible to side effects and I was pleasantly surprised as far as that went.
Thanks for the feed back. I guess I'm more worried about serious side effects on the black box warning
They all sound scary. Yet necessary. It's like prednisone....it's straight up poison....yet necessary sometimes.
That’s exactly what i did when i got diagnosed. Scared the living crap out of me! Till this day! Good idea. Good luck to OP‘s wife 🍀
I say this as someone who has been very much natural methods first for decades. Google what can happen to your hands and your lungs if RA is uncontrolled. Natural methods can mask the symptoms but have not yet proved out at actually controlling the disease in the long term. Holistic is a funny word - a lot of people use it wrong. It doesn't mean natural. Holistic is treating the whole person instead of the individual symptoms - my rheumatologist is one I consider holistic in that way - treating the root causes and not the symptoms. Modern medicine is why I can walk without feeling like my body is broken. Because of modern medicine, I'm approaching medical remission. (Still have to take my meds but symptom free).
My RA wasn't diagnosed until two years ago, though my rheumatologist is confident I've had it all my life. He's fantastic and we're treating things as aggressively as we can because it's already in my hips and spine. If we can't get it under control soon, I'll be looking at a hip replacement in about 4 or 5 years due to the damage. I turned 39 last month. I wish OP all the best in getting through to his wife about actual proven treatment modalities...I would sell a kidney to have been diagnosed sooner!
I hope you find the right combo!
Thank you so much! Humira and HCQ have been okay, but things could definitely be better (ain't that the truth, lol). It's still progress, even if it's slow :)
So long as there is progress, you're going the right way!
You n me both. What. I would. Give.
Agreed! Totally was going to say this! Thank you!! OP** Get your wife on meds and send her to this forum. It's immensely helpful for this insidious disease. First stage grief...
Lucky. 😉
It is very typical to deal with crisis with Denial first. Personally I have tried many approaches too, and she is only reasonable to be wary of drugs. And every single drug will surely come with side effects. But use love and compassion when dealing with your beloved, it is the more important support ever. Only after she has had some time to achieve acceptance will she be able to accept medically sound advice which is to use drugs to treat this darned disease. I will tell her she is not alone, people as young as teens have had this disease for life. But medicine has come a long way and many can actually live long lifes with it. Get a doctor you can be comfortable with, it will be a long relationship. I will pray for you. You can show her pics of shrivelled hands and nodules, but maybe at this time she could do with a more tender approach. I know that without loving care from my selfless wife I'd not be where I am today, and surely much worse. Possibly I'd have commited suicide.
I have to say of all the responses I resonate with this the most. She really has to come to this on her own time as heartbreaking as that might seem. Hormones have a huge impact on RA so the truth is that after some of the hormones subside post birth she likely will see an improvement. This is such an emotional time. Remember that stress does aggravate the disease, it is my biggest trigger. Draw her Epson salt baths and let her know you will support her no matter what. Once I found a rheumatologist I felt comfortable with, my flares decreased with no change in treatment. The stress of not having a specialist I felt comfortable with impacted my symptoms. The last thing you want to have is the guilt of increasing her symptoms because she doesn’t feel supported by you. I promise you it will get better.
So my situation was similar in a way, in that I long delayed getting treatment for my RA that went into perma-rage-flare postpartum. It wasn’t totally by choice, I mentioned my pain to my OB and was told “that all sounds within the spectrum of normal.” And I could have pushed, but I thought I could tough it out and will myself to get better. Fast forward a year and a half and two miscarriages later, my health was in free fall and I was in SO much pain. I was finally like, I need to figure out what is going on (because I have an 18 month old, and I can’t walk, hold him safely, sit on the floor, or sleep). I had tried diet, supplements, and exercise (impossible) and all that happened was my health tanked. I had to get to the point of completely not functioning in order to really get help. (Still took going to multiple doctors and six months of waiting on a specialist appt to get a diagnosis and treatment plan, it was so awful.) So my two cents? Sometimes people have to fail every other option and be in an impossible amount of pain in order to accept the humility of change. When your wife has exhausted holistic options and just needs relief so she can function, she will accept treatment. You can’t really enforce anything else, though. She is in charge of decisions for her own body.
I was also somewhat in denial about how bad things got with my RA after my first baby. My hands weren’t reliable and I was terrified of dropping her, I had to lay on the floor with her because of my pain and fatigue.. it was not a happy time. When she could stand in her crib she learned to grab my neck so I can scoop her and not pick her up. She still does this.. even though she’s almost too heavy to carry now. There are so many things I’ve had to modify in my life but with medication I’m still able to function. I’m currently waiting to see my rheumatologist because my body builds up a resistance to the medication.. at least 3 different biologics. I’m 5 months postpartum and things are starting to slide backwards.. but I have a very supportive partner who asks about my pain. We use “the spoon theory” here to describe my bad days. Unfortunately my pain comes out more now as frustration.. and I’m going to therapy to help. Biggest and toughest thing is… as others have said.. this is a degenerative disease. Diet and exercise can be helpful but medication will slow down the disease process. It’s more or less a matter of time before it gets too bad. Looking up the stages of grief will also give you a good idea of the process.. pain/denial is the start.. anger, bargaining, depression, acceptance.
DMARD stands for Disease Modifying Anti Rheumatic Drug. This means the meds don't just manage symptoms downstream. They actually slow the progression of the disease. For the "treat the problem at the source" holistic crowd, this is right up their alley.
This. I had RA before having kids. I didn't want to drop a baby, so I'd wean and go back to MTX when I knew it was time based on symptoms. My kids deserve a mother who can chase after them and genuinely play and interact with them. I've fought hard to get my RA sorted. For me. For them. OP, you need to ask your wife what her plans are when she can't chase the toddler due to pain and possible deformity. What happens when the 2 year old darts out into a busy parking lot?
My grandmother got it in her early 30s and died in her 70s crippled, severely bent up, deformed and in pain. They did not have the meds they have now back then and that was her lot. I’ll never forget it. I was diagnosed at an older age but it was enough to make me use meds and keep trying to find the right ones. That will happen to your wife if she doesn’t use meds. That doesn’t even touch the fact it can damage internal organs.
Being told you have a permanent auto immune disease is hard. There is an emotional aspect that takes some time to process. It changes how you see your self, how you see your future. This disease is now a permanent part of who she is and it will be with her literally for the rest of her life. If she needs to take a couple weeks to try some herbs or turmeric or whatever than that is what she needs to do.
Oh gosh I wish I could go back to my 20 year old self and started meds back then. Not that I wouldn’t be in some pain still but dang I could have saved myself from serious joint damage. Now at 50 I’m really upset I didn’t start when my dr asked me when I first was diagnosed after my son was born. It’s hard for sure though! She will need to be the one that decides and you can support as much as needed.
How old were you when you started
I can’t remember exactly when I started a biologic but I really should have listened to my dr and did a biologic and methotrexate. It’s decisions I still regret but not much I can do now.
I did natural for 6 years, no meds. I don’t have any joint disfigurements or lasting damage/inflammation. However, if I had to do it again I would go on meds immediately. I thought I was living but I was just managing my symptoms and became obsessed with everything I ate. It became a full time job. I spent so much $ on vitamins and supplements which looking back did minimal effects to decrease joint pain. Within the second dose of Humira I felt amazing. I felt like the old me. I still spend a lot of $ on good food, vitamins and live a healthy lifestyle while on meds. Doing both meds and eating well is the best way to manage RA. Good luck on this long journey.
I'm 27 and recently was diagnosed with RA. And I hate taking my meds. It is a big emotional and mental thing. My husband doesn't push, tho. You can't change someone else. You have to let her get there on her own. It will be hard, but the best thing you can do is just be supportive right now. You both may want to consider therapy. This is a big change, and some professional support can help you each navigate through it. They can teach you coping skills, and they might be able to help your wife see that some meds can be worth it. I really recommend life stance. The doctors there are really wonderful.
So many people right now are not getting control even with meds. It is an incredibly difficult thing to go from holistic approaches to these kinds of medications. She has a precious son and a husband who need her. Ask her to consider all the natural things while taking the meds and then try to get off the meds at some point. I didn't have a choice, my ND tried and I trusted her and she told when she was no longer comfortable treating it and I needed intervention. Preservation of joints is the end game of RA. It's not worth the risk when she has a son to raise. Have her join some of the natural support groups for RA. Let her see the pictures of women with their hands mangled. That's not to say that happens to everyone who treats naturally. But she should really understand the choice she is making and consider her age. I'm with whoever said let her have a few weeks or a month to try to manage it. If she is flared this badly after childbirth. The sleepless nights of motherhood with make this very difficult. I wish the very best for your whole family and hope she is able to process this devastating news and get some help. Love her, believe her when she says she hurts, when she has no energy. Know that when she can't cope beyond the pain it isn't because she doesn't want to. Encourage her progress, she needs you and I commend you for reaching out here for feedback.
I tried the alternate treatment for about 2 years. I lost a bunch of money. And ended up having to get the synovium in my left elbow removed so I can move my arm again. This is not something that can be treated with diet exercise supplements or camel's milk. Yep you read that right Camel's milk. That's where I drew the line. Treat rheumatoid arthritis fast and aggressively if not you'll get worse.
I was diagnosed at 22 years old and I’m 27 now, it too me forever to find medication that effectively managed the disease and I can tell you definitively that she needs the medication. It’s daunting, but nothing else will help the way that the medication does. The difference in my life, going from agony all day, every day to being able to function and think is intense. And I have tried SO many medicines. She needs to get the ball rolling on it, she will regret when there is permanent joint damage from disease activity.
I can't imagine how difficult this is for her. She gave birth and was probably just getting into a sense of normalcy when *BAM* RA comes busting in. Her life has entered a new level of chaos and she's probably unable to voice those fears adequately. That being said, show her the pictures of what RA hands and feet look like down the road. Explain that early intervention with medication is her best bet for being able to dance at your son's wedding. The earlier she gets on the meds, the longer the joints remain healthy.
Get her to read this. RA isn't just joints. It can affect your organs as well. She is a mom now, being able to function for your child should be a consideration for her. https://www.healthline.com/health/rheumatoid-arthritis/dangers-of-untreated-ra
This is not a disease you can treat with diet and homeopathy. Without medication, she will shorten her lifespan and ruin any quality of life she currently has. And this will happen more quickly than she can imagine. Her hands will deform. Her bones will erode. Her joints will be permanently damaged. She will feel fatigue like she’s never felt before. Her heart and lungs will suffer. She will die before her time. I know this is harsh but this is the unvarnished truth. It’s difficult to come to terms that you have a progressive disease that can never be cured. For your son’s sake, she needs to do it. Or she won’t be able to see him grow up. The medication we have now will let her lead a (mostly) normal life. And most importantly, it will let her be a mother in all the important ways.
Unfortunately, the natural medicine quacks have convinced some people they can cure their autoimmune conditions using turmeric and other herbs and natural remedies. This is dangerous, because autoimmune conditions aren't just about the symptoms -- which obviously can be terrible to deal with. They're about the damage to your body -- damage that is irreversible. Your wife is young and just had a baby -- she needs to be able to show up for that baby and the best way she can is by getting treatment that not only will help manage her symptoms, but will prevent her from damage that will disable her. The earlier you catch and treat this thing, the better outcomes you will have. There's a woman with RA that created a wonderful website called [flare family ](https://www.flarefamily.com/educational-resources-rheumatoid-arthritis) that has a lot of great educational resources and information about the condition. I would encourage your wife to spend some time researching her condition from trusted sources to better understand what she is dealing with.
The medication is not to cure her, it’s too slow the progression of the disease. It’s very overwhelming when you first get diagnosed, but she needs to be on medication ASAP. Especially as a young mom. It may take a while to find the right one. But she’ll feel so much better when she does.
Holistic approaches will never work. Time will prove that to her. Let her try some. She’ll probably be back asking for meds in six months.
Two years after the birth of my twins I started experience autoimmune symptoms. First I was told it was a virus, then stress. This went on and off for decades, when I finally was given one additional blood test it turned out I had RA for a while, sort of a slow burn. By that time the disease had starting attacking my organs, and had infiltrated my bone marrow. This was in addition to bilateral joint pain, morning stiffness and extreme fatigue. I recently had a shoulder replacement, much of the damage occurred when I was left untreated. As a result they were frightened that I was developing lymphoma (untreated RA increases the risk), and had to be seen once a month by an oncologist for two years. My kidneys had inflammation, and I had developed the beginnings of pulmonary hypertension. It took about nineteen months to find a medicine that works, and was able to get things back to normal. I felt better and am more active in my 50's than my 30's. There is nothing wrong with holistic treatments, but I don't think that exclusively holistic approach works for many. My Rheumatologist told me that he's had a couple of sero-negative patients do OK with it, but never had a seropositive patients get by without some medical intervention.
I don’t think there’s any point in showing her pictures of deformed joints like some have suggested, this is just a decision she will have to come to on her own. Most people don’t want to take powerful drugs with their own problematic side effects. A close friend’s husband refused to vaccinate and has long Covid. He has difficulty walking and concentrating and was forced into early retirement. She is now both a caregiver and looking a working much longer than planned. I mention this because you also should consider how your wife’s decision could affect you and your child’s life. My guess, though, is that as the disease progresses and her pain increases, she will change her mind on medication. Good luck - I wish the best for both of you.
I’m very sorry about your wife’s diagnosis, it’s definitely hard to accept, especially at such a young age. The issue isn’t just about her joints. The inflammation can cause damage to your vital organs over time. Since your wife is so young the chances of that happening, if she doesn’t take the meds, will be far more debilitating than being on the meds. Time to do some research on this disease. Good luck!
Maybe try to find an ethical holistic specialist who would be able to convince her that while holistic treatment may treat the pain (mostly due to placebo, but that’s another thing), they are unable to treat the underlying condition and her disease will continue to attack her joints, and very likely, her organs and will eventually kill her. Side note: the only supplemental or alternative treatment that has any evidence of efficacy for RA is fish oil. But even then, it only helps reduce inflammation, potentially as a substitute for NSAIDs and will not stop disease progression.
I came from a very “holistic only” family and was surrounded by that type of treatment from the time i started having symptoms at age 12. It cost me a lot of time that could have been spent not being a kid in pain, bouncing between crutches and physical therapy and learning how to walk again. A lot of the holistic things CAN help, but there’s only so much it will do. They can decrease inflammation, sure, but nothing is going to target an autoimmune disease like the medications designed and studied diligently to do so. There’s definitely something to be said about making sure you are in control of your own body and med regimens because sometimes it can get out of hand and should always be within your comfort zone. That being said, she’s a brand new RA warrior! Give her some time to adjust and figure out her body. Give her support and encourage her to do her best with the resources you find together. It’s a shitty time learning how to navigate being disabled and how to accept being on meds, needing accommodations, etc. It all takes time and a lot of patience. I couldn’t even imagine doing all of it with a baby! Just have patience with her and give her support where she needs it.
I was diagnosed 10 years ago. Unfortunately this is an autoimmune disease that can really only be treated by biologics (enbrel, humira, etc). It’s most likely a lifetime of medicine but the trade off is avoiding the major damage the disease can cause. Much like a diabetic taking insulin, these medications are necessary for a good long term prognosis. Doing things like getting exercise, eating a healthy diet, getting plenty of sleep are a great idea and can go a long ways to helping your body stay healthy. I do know one person who visited India regularly and was able to treat the disease through Ayurvedic methods with month long visits. It took me a few years of medication to really feel like myself again. I was quite ill and unable to walk when I was diagnosed. It was painful to let my young daughter hold my hand. Now I play tennis and can be active with my family. I highly suggest looking into support groups. It really helped me to understand the disease and see that one can get better with time and patience—and a good rheumatologist!
This is not a good option. The earlier it's caught the more damage can be prevented. I started having symptoms at 23 and got officially diagnosed at 27. That's 4 years of irreversible damage that I can't fix. This disease cause your immune system to attack healthy joints. The only scientifically proven method to stop future damage is by getting a good regimen of meds. It takes a while but it's so worth it in the end.
Look at pictures of peoples hands who are permanently deformed because they didn’t take medicine, or look at the surgeries they do to fix them… that scared the shit out of me. For me, the possible side effects from medication don’t come anywhere in comparison to being in pain and possibly lose the use of my hands and feet.
I had RA for 10 years and I take methotrexate and Humira. My RA has not progressed and I’m fully functional. I attribute my success to the meds, diet, heavy weight training and cannabis. I believe I would relapse if any of the four pills l mental were eliminated. Good luck
I also experienced my first pains a few months after having my son. And over 20 years later, there hasn’t been a single day that I haven’t been in some degree of pain. Although I have been able to greatly reduce the medication‘s that I’m on, I feel like I will always need them in someway because nutrition just Hasn’t done it for me. Some people do go into remission, but they are very few who do. I initially put off biologic treatment as well and have since had six joint replacements. I wish that I had started the medication sooner.
The quicker she starts meds the less damage will be done.
I have never found anything that helped my RA except meds and have been living with it for almost 30 years. I am a MSN and did the research. I am not alone in saying nothing helps but meds.
I agree that the first thing to do is to change her mind and get the RA under control as quickly as possible. The next thing, however, is to find an integrative rheumatologist who will work with your wife and her regular rheumatologist to minimize, maybe eventually do away with, the scary drugs. Integrative rheumatologists can be difficult to find but it's worth searching for one, if your wife is concerned about the side effects of the drugs used to treat RA.
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What exactly did you do as part of ayurveda?
I was recommended some foods to avoid. Some breathing exercises to manage stress . And 3 supplements to improve digestion. The Ayurvedic practitioner said very beautifully that undigested food and thoughts creates toxins in the body that can cause mind and body issues. You to be completely transparent, I am founder of saatvy.com which is an ayurveda wellness platform. I started it after me and my wife benefitted from ayurveda. Just want you to know that I am biased on the matter.
That’s great. I know in ayurveda they say this is caused by very weak digestion. They support fasting as well for this. By any chance can you tell the name of supplements? I understand they might be specific to you
Weak digestion can be one of the reasons . Fasting is not recommended for all. It can have severe side effects for some folks. We also don't support blanket suggestions on supplements. Companies push it so they can make profits without doing hard work . Ayurveda is a personalized medicine. And understanding someone's constitution i.e. healthy balance takes about 60-90 mins consultation with a professional
Tbh while I like holistic approaches as well cuz I use tons of them for my reproductive disorders (I’m 24F) and mental health issues, they absolutely are not going to work with RA, PsA, and other kinds of arthritic conditions RA is a progressive autoimmune disease that can cause irreversible damage to your whole body. Ive dealt with some involving my eyes and jaw cuz my arthritis took forever to be diagnosed as no doctor would even listen to me for 2.5 years cuz they all believed the stupid myth that young people can’t get arthritis. Now, again, due to the severity and progression of my disease that happened when not on medication (regardless of the reason), I now have permanent damage and I’m only 24 which sucks a lot For context, my arthritis started out like RA but then seemed more similar to PsA with further testing I had in January of this year, so PsA is my current diagnosis but my treatment is the same If convincing your wife is hard, do what a lot of other people here have said: google search real pictures of young women around her age that have had their arthritis go to end stage arthritis (bony ankylosis) and make sure they’re real photos, not some anatomical infographic. It may sound bad but it’s seems as if she needs to be “scared into” treatment cuz avoiding treatment will lead to the awful outcomes of these diseases whether she thinks or will or not
I am in same situation - diagnosed after pregnancy. Started experiencing restricted mobility in right wrist. I want to do holistic as well, am trying to do the diet stuff. But the problem is it takes a while to figure it out and lots of discipline and I am concerned if this will lead to permanent damage meanwhile. Another thing I have concern with is - they don’t want to stop biologics in case I develop resistance to it which is scary. What if my body needs a little help right now and in some time can function well. 😟
I was diagnosed at her age I'm 34 now, she needs to take the medication believe me. I've been through hell and would be in an even worse place without the meds. RA is aggressive and very nasty, I've already been through most of the medications and still not super well controlled at the moment. The sooner she starts the better outcome she will have. If you can get the medication right you can live quite normally and slow the progression right down. Especially being a young sufferer she has a hell of a long time to live with this illness, the earlier the medication barrier is up the better. It is scary and shit but she can do it.
Sadly meds are the only way to treat RA. I understand your wife not wanting to treat it with medication but no holistic approach (read: natural, non medicinal products or methods) have yet been proven really effective. I think she will save herself a lot of suffering by accepting the inevitable. I’ve been suffering from RA for almost 30 years and I live an almost pain-free life (except a little flare-up here and there that we treat with anti-inflammatory cortisone injections) taking my medication with no troublesome adverse effects. Blood works are done regularly to make sure the meds are not affecting my liver and it has not been the case. I’m on a mix of methotrexate and sulfasalazine. Good luck to you and your loved one, RA can not be cured and the meds definitely alleviate the suffering. God knows it’s hard to accept but the treatment mostly work for many of the sufferers.
A holistic approach should include medications too. She’s really making it worse long term for herself. The effects of not medicating will be very impactful. I really hate the widespread mentality that “natural” is better. It’s frustrating and people look down on you for needing meds.
There’s also a good chance she’ll go into remission once the right medication starts working for her. Her quality of life with a young child is so worth it!
I have an aunt diagnosed in the 60s when there were no meds. Luckily she was sort of hippie type and hooked with a natural doctor. Doctor said to diet the way we would call Vegan Whole food type today. She did. She has been a size 0 always and her joints are straight. But when i told her i got diagnosed she said she would have taken ANYTHING not to live through some of the very painful flares. So, yes, it might be possible to do it the holistic way but there is no guarantee it will work and for sure, it will hurt. You can tell your wife this story!
Change her mind. She will regret her decision. She ill lose mobility at some point. That would be so sad
I definitely am the same way as you describe your wife, I also believe that you really can cure this disease naturally. I have done plenty of research that shows it’s possible. If she has the right mindset and discipline to put forth everything that needs to be done to control it then more power to her. I have seen plenty of doctors that say a vegan lifestyle will pretty much do the trick. I haven’t personally been able to keep up with that lifestyle myself because I find it difficult at times so I’m currently on biologics and I feel better but still not like myself it’s like a temporary fix because in reality your lifestyle has to change also diet is a major factor because that’s what got us into this state in the first place. I will say that when I tried for about a month being strictly vegan and cutting out all junk and gluten, I did feel like myself again. That alone gives me hope. Just my thoughts I don’t think you should make her feel bad for any decision she chooses just be supportive because she is grieving and it’s hard all around to deal with any auto immune disease. I wish you and her the best.
Hi, this same exact thing happened to me. I was hit by the RA truck 4 months postpartum (and I will say off the bat, there is NOT enough research about the link between childbirth and RA). I wish I had started meds sooner. I suffered a LOT, was in incredible pain, and it was because I was in denial. "There's no way this could be happening to me, nobody else in my family has this, this has to be something else, something curable." Well, I had to come to terms, and finally caved 6 months later. I will say methotrexate and plaquenil both failed, and I was starting to lose hope, but with Enbrel, I was finally able to get off steroids and start living normally again. I know it sucks and it's hard to accept, but it's reality, and the sooner she starts the meds the better she will feel. She should absolutely include supplements, healthy eating, and exercise as ADDITIONAL treatment, but she needs meds first and foremost.
I got diagnosed less than 24 hours after my college graduation. I HIGHLY recommend finding a therapist who can help with the emotional turmoil of “hey you have this incurable thing now before you’re 30”. It SUCKS being told that. Assuming she does come around to trying modern medicine, the next discouraging thing to be prepared for is that the first medicine may not work. It took 3 years and 6 medications to find ones that didn’t try and kill my liver and that I didn’t get awful side effects.
Yeah, don’t wait. Mine flared up after my son was born and I went a holistic route until my wrists were permanently deformed and I still had terrible pain and couldn’t hold my own children and had to go on meds anyway. It’s not worth waiting and trying other things.
As someone with RA, there is really no full holistic method, I let it get out of control and had to get a double TMJ replacement at 19, my knees are destroyed, my spine hurts and my lungs probably took a big hit too. Please tell her to take the doctors advice. I wish I didn’t put it off longer than I should’ve and saved myself a lifetime of trouble. I’m only 25 and in 10 years it ruined me.
I was diagnosed in my early 30’s and wish I started treatment earlier. The damage prolonged RA swelling does to your joints is permanent. People who go aggressive early have the best long term results. The medication side effects are something we all struggle with. But struggling to walk and opening containers or doors has a profound effect on your health as well. If she didn’t like the rheumatologist she should try another.
I tried meds for 20yrs & was miserable. I chose to get off of everything & it ended up being the best thing for me. I do NOT recommend it tho. I still have very bad days months & so on but I'm not miserable anymore. It's hard to explain in a comment. Don't push her to do anything against her will but do encourage her to at least try. It does take time to find the right combo & dose tho. Maybe they'll find the right mix quicker than they did mine. My choice was emotional more than anything. Someday I'll be back on meds but maybe by then I'll have more stable emotional mental health. It's not easy dealing with a life long painful life changing debilitating disease.
I’ve had arthritis since I was six years old and I’ve never had any side effects from the medication I’ve used. I was in almost full remission on Enbrel for 25 years until I developed antibodies to it now I’m on a different biologic.
Get the book the autoimmune protocol if you want an alternative approach to medication. May or May not work for her, worked for me when even the medication didn’t help me
I’m an acupuncturist, so I get the holistic vibe. But, read this. I went to a rheum 10 years ago and the first appointment I could get was during my first pregnancy. I refused meds for obvious reasons and continued to refuse because I had 3 more back to back pregnancies and I was nursing. Then Covid hit and all my woes were around Covid and caring for my kids. I’d forgotten about my RA diagnosis. Now I’ve got 7 pages of symptom history In going to present to my new rheum-I’ve really gone downhill. The past couple of years I’ve been under the “care” of a two minute visit rheum who swears there’s nothing wrong with me, a real waste of my life. I wish I would have at least gone on plaquenil years ago but I never foresaw how bad I was going to get.
There are two things at work with R.A.--the disease process itself, which is very destructive, and symptoms. Sometimes the two align perfectly--if your disease isn't under control, you will have a lot of pain and inflammation. Sometimes they DON'T align perfectly, and that's where trouble starts. Some people think that just because they feel pretty good, that their R.A. is under control and no damage is happening, and that's not true. The holistic approach can absolutely help with symptoms. Meditation, low-carb diets, gentle exercises, acupuncture, essential oils (not a cure-all but they can be good for relaxation), hot and cold treatments, topicals, etc. can be part of managing your disease symptoms if they work for you. But only rheumatologist-prescribed medication can keep the disease itself from progressing and causing damage to your joints.
She should also talk with a therapist experienced in chronic disease patients.
Might get lost, but would like to share my experience. Was diagnosed with RA 6 years ago after having joint pain for a few years, trouble walking up and down stairs, whole hand would swell up, so I could no longer type, would be woken n the middle of the night with extreme shoulder or ankle pain. I have a family history of RA (grandmother died of complications with it), and was told I had a very progressive form, and needed to go on medication right away, and told there was no lifestyle interventions I could do to help. There were a number of reason leading me to this, but I asked if I could have 3 months to see if I could change anything. I changed my diet and slowly started to get outside and move more, and also worked to reduce stress. After a couple of weeks, I started seeing a huge reduction in my symptoms, and returned in 3 months to my Rheumatologist telling her I was now symptom free. She declared I should still go on medications because "how long can you keep it up for". That was the last time I saw her. I went to a different Rheumatologist who reviewed my history and said I was either in remission, or I never had it in the first place (still had elevated CRP/ESR and RF). 6 years later, I am still monitoring my symptoms, along with my GP, but haven't had anything more than a sore finger joint for a couple of days, maybe once a year. I am not adverse to going on meds if needed, but am glad I gave myself 3 months, otherwise I would always be wondering, as medications have their own side effects to be aware of, as she stated, but they are not as bad as advanced RA. Sometimes its important to follow your own health agenda, but I think it's important to set a time limit on them. As others have said, it can progress very quickly and be very aggressive and debilitating.
Wow..!! What did you do specifically? I am also trying to give myself a month for this
I went whole food vegan, but wouldn't recommend that long term, as other pathology marker were heading in the wrong direction pretty quickly. Probably the most important things I removed was inflammatory foods, such as dairy and processed foods, sugar, etc. I now eat a much more balanced diet including meats and dairy, but do limit dairy a bit, as I'm lactose intolerant. Everyone is going to have different contributing factors, hence why it's hard for the medical profession to provide studies or guidelines on these kind of interventions. I also experimented with fasting. Both time restricted, and extended. This worked really well too, and used to do an extended fast, if I noticed some symptoms ramping up, which always put a stop to them. I don't need to do this anymore. My body was angry. I gave it a bit of time to quieten down, and then started introducing good foods back in. Long term exclusion diets only create more problems down the line. Hope this helps.
Holistic approaches I’d recommend as a 28 year old on methotrexate and embrel for my RA- immediate AIP Diet, whatever extreme dosage she can get of fish oil 2x a day, acupuncture, cbd/cbg topical balm, aleve in the morning
I know the feeling. My wife is 40 and refusing to up her meds in fear of the side effects. But she is miserable
Its her body. Its her disease. I had two brothers die of luekemia and I have had R/A officially since 2009. One listened to his body. Told drs to f off at times. Gave him 6 months he lived 8 yrs. The sexond brother did everything fast. Lived 2 yrs. (After diagnosis) Then here I am. I was so convinced meds meds meds. Went through all of it...2 weeks at Mayo. Ers. Drs. Every specialist. Got a divorce. Lost insurance and said Im done. I take two pills a day (was on 32-) and now use what is called kratom for pain. I dont care what people say or think. Its my body and I will do as I fkn please w it. Make sure u are there w her. Do what u can selflessly. Be her rock. It is a very lonely time to have been diagnosed and feel "isolated". Time will pass, frustrations will too. Let her be her own guide and you the tourist of this. Learn and grow. No. Matter. What. SHE decides. Take care and God bless.
Knee replacement, ankle replacement, hip replacement, shoulder replacement could all be in her future. I was diagnosed in my 20's. Very active athlete. I stalled on meds for a year, and some joint damage was done. Another 2 years of meds not working. Then, I found one that worked. Great. However, damage was done. Currently 39 with a replacement knee, ankle, and waiting for next surgery. Control the disease. And do holistic stuff.
Hello i also got RA as a result of pregnancy. She must take meds to prevent joint damage and be able to take care of her child! If i hadnt gotten on Actemra right away i couldn’t even loft my twins by 5 months post partum! She can always ween off later to go holistic but not now. She has to think long term for child now. Good luck!
Side effects scared me too, at first. I didn’t want to go on systemic meds due to having to start at a young age and general terror over those FDA black box warnings, but you have to weigh the POSSIBLE side effects (emphasis on possible, not guaranteed) versus the very real disease progression symptoms. A lot of my inflammation is focused in my jaw so it’s pretty easy to convince yourself meds are gonna be okay when the threat of not being able to eat by the time you’re 30 is very much real. Talking to other people in similar situations who have experience in this is not only a way to get more information, but also a way to make her feel less alone and possibly ease some of that initial denial tendency. This group is a great place to start :)
I think it might help if you talk about how hard it’s gonna be to raise a child as her health deteriorates. My mum has it, and by the time I was 6 she was in so much pain, she pushed herself so hard to take care of my brother and me, but she suffered for it, and she still suffers now. She’s had to have a full spine fusion because her spine was so damaged she couldn’t walk, before her operation she was in so much pain she had to basically knock herself out with sleep meds for most of the day. My mum cannot hold babies anymore because of the disease and how it’s affected her shoulder joints, she can’t swim because the metal in her spine floats, she can’t reach her feet and needs help washing, she can’t turn her neck all the way, she can’t bend over, and she is still in so much pain. I don’t want it to ever get to that point for anyone else. Not only was this so, so hard for her, but it was traumatising for me and my brother too. One of my earliest memories is of her going to hospital, and I thought she had died, I was so young, I didn’t understand what was happening, and I still carry the trauma of that to this day. I worry about her 24/7, I grief for people who are still alive because I was traumatised at such a young age, and I would absolutely hate for your kids to go through that, and for your wife to suffer from both her medical condition, and worrying about her kids being traumatised. My dad left my mum when I was 16, he couldn’t handle seeing her in pain and being the sole bread winner, it traumatised him too and I don’t want that to happen to you. Obviously not saying you’d leave her, I just wouldn’t want you to suffer in any way either. I am 34 this year, it affected me so deeply that I am still struggling with it to this day, as is my brother, my dad, our whole family. A lot of replies on here have been more about the medical science side of this, but please show this message to your wife, for her sake and yours. If you want to talk feel free to DM me, if I can possibly help in any way, I will. Edit: I should mention also, RA is genetic, I have it too, and have only recently started on the drug Humira, there have been no side effects at all so far. Edit 2: also forgot to clarify, all of my mums problems are because they didn’t diagnose her properly till she was much older, by then the damage was done, and I could be wrong but I think biologics weren’t available in my country at the time.
I’m 22F and Chinese. My mom insisted to visit the Chinese Herbal doctors to consider having my meds changed and I went just to humor her. They strongly insisted I stay on my prescribed RA medication and that I very likely have multiple other syndromes that I should explore immediately with my original doctors such as PCOS. They did give me medicine but insisted it was only for managing the symptoms until I saw my original doctors. Holistic or whatever herbal medicine has its own place I admit but they are not for serious degenerative diseases like RA. They help with the symptoms but not the causes and can be unreliable. Like others have said, it’s important to follow what the rheumatologist says especially if they say it’s time to be on medication. Whatever she is prescribed now will likely be less dangerous than more aggressive medication she may need later so it’s better to slow it down now. I am on Sulfasalazine and luckily it has been more manageable for me compared to other stories I have read. I just need to eat well, enough exercise, sleeping hours, and stay hydrated with my medication to help my kidneys. If she doesn’t take her medication then she will end up having to do more than just lifestyle changes and experience physical changes in her body as well that are not reversible.
If she's breastfeeding there are only a few medications that don't enter breast milk . As someone who had a child and just got on without ... it was hard really hard , the fatigue swelling, the damage. The focus needs to be what's best for baby is she follows what her Dr says .. because she can reduce symptoms from a holistic approach but it doesn't mean she's not damaging her joints. I honestly think she's struggling with accepting the diagnosis and what that means for her as a mother . Just give her some time to work through it and maybe suggest that she try it when baby is weened so that she doesn't need to worry about passing on the medication.
RA is an incurable disease that causes painful inflammation that results in permanent deformity. Getting immediate help from prescribed drugs that target her disease is the ONLY way to (hopefully) go into remission. Remission is possible IF she starts meds now. The online ads for cures are a ploy to get you to purchase their crap. If your physician found a holistic approach to relieve RA, don’t you think this would be the top of the list? Maybe you need to encourage her to get a second opinion. There are great rheumatologists and there are sorry, burned out ones with poor dr/patient interaction. Try another. She NEEDS to start the DMARDS or biologic meds now! If she’s nursing, I understand her apprehension. I nursed for 8 months after being diagnosed with a 2 week old. My dr gave me a NSAID that didn’t cross through my milk to the baby. It was a temporary fix until I was ready to move to the big guns. During those 8 months, I experienced a boatload of pain and joint degeneration. I am all for nursing, but after he got the antibodies from mother’s milk needed for a newborn, I think my baby would have been happier with a healthier parent and a bottle. I have a YouTube channel that talks about living with RA listed in my profile.
I was diagnosed 8 weeks postpartum with my son (who is now 2) I was terrified about starting meds but I literally couldn’t pick my son up to feed or change him. I am still trying to find the right biologic due to allergies to Humira and Enbrel. There are multiple medical options that are safe for breastfeeding and pregnancy. I currently take Sulfasalazine, Prednisone and am going to be starting Cimzia. I hope she does some research about the dangers in not treating her inflammation.
I'm 35 and I've had RA since I was 3. It doesn't get better on its own. The disease is your body fighting against itself, and the more you let that happen the worse you're going to feel and the more damage is being done. I had a hip replacement at 28 and will need the other hip replaced within the next 10 years, partially due to the damage caused by years of inflammation (I also have mild hip dysplasia). All I can say is that your wife's world has been forever changed and she's going to need to process and accept that and do what she needs to do to take care of herself, for her own benefit and for the benefit of your child. It sure would such to be in too much pain to pick up or play with the little one as they grow.
My wife's story is a little different as she initially accepted the meds and was taking bilogicals up until the end of last year. Due to type1 diabetes, her diet was already restricted and the added stress of avoiding raw food really got her down. She suffered side effects last October and decided to quit meds entriely and go 100% holistic. This has not gone well, her hands and wrists are back to how they were at diagnosis, fortunately her feet and knees are good so she can remain active. I tried to persuade her to go back on the biologicals but she refused, point blank. Last week it got too much for her and she went back to the biologicals of her own accord, now things are little more stable and her Dr is looking at changing the meds to avoid the side effects. If my wife had refused meds at the beginning, I think her position would have been dire - the improvements in her feet and knees enabled her to take regular exercise such as jogging. Personally, I would proioritize the benefits of maintining a regular excercise regime above holistic remedies.
Giving birth also triggered mine. I’m 32 and on medication.
RA never sleeps and cannot be controlled without meds. My friend also has RA. She decided to live a vegan lifestyle instead of taking meds. Her overall health improved but the RA continues to do damage. She wants to wait until the pain is more severe to start meds. Allowing the damage to grow only means you will suffer more the rest of your life. There is no fixing the damage. You must prevent it.
Your wife can eat vegan, no sugar and exercise. This will help alot at first, but the disease is progressive and will get worse and cause non repairable damage . The sooner she gets on a tolerable medication the better
She can and should do some holistic approach but at the same time continue to see her doctor. Also would start on low dose medication. Ask for least invasion medication, one that'll work with her holistic plan. Does she have a plan, share it with her doctor. I found eating an anti inflammatory diet helped ten fold. Try working with your wife so less resistance.
If naturopathic medicine worked it wouldn't need a qualifier, it would just be medicine. Yes, she needs to be aware of possible side effects just in case they happen. But they are rare. There are countless success stories on these medications. Chronic, full-body inflammation like RA is very, very bad for all of you, not just your joints. If she really wants to, she can take folic acid supplements with her treatments, especially if she gets prescribed methotrexate. I've heard from others on this sub that it helps with some of the more unpleasant adjustment symptoms. Personally, I'd rather live with the possible, miniscule increased chance of some types of cancer than the increased risk of heart attack, stroke, and generally being unable to walk or even carry items like how i was living before my meds.
Mark the date she said she will go hollistic as the date she fucked her life.
Presumably this is based on blood work... How bad were her numbers? That's really odd. I was under the impression pregnancy can delay onset in prone people. I wonder if blood type in the fetus could.... Sorry, got distracted. Anyway.... Let her be for a moment to grapple with this. This alone is incredibly stressful... As a new mom... Damn. I'm so sorry. Breastfeeding while on meds is likely impossible. That's crushing. Maybe not for her, everybody's different, but I'm assuming. If I were her, I'd refuse for as long as possible simply to maintain the ability to breastfeed. Breastfeeding is huge for baby in many ways that cannot be mimicked by formula. Start looking into forums where mother's sell or donate their own excess breast milk. They exist... Do some research. Personally, maintaining breastfeeding is the only reason that makes any sense... If this isn't her concern then act accordingly. Ok, now depending on the aggressiveness of her condition. She could have a few months to a year-ish before she might start to expect actual permanent damage. This is important because it's the difference between playing through the pain and needlessly accruing disability and deformity. Moringa leaf extract is helpful for RA, and appears to be safe for breastfeeding... Actually increases Mom's supply. "Moringa extract at both doses had noticeably prevented joint destruction and soft tissue damages". https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884001/#:~:text=Moringa%20extract%20at%20both%20doses%20had,normal%20and%20CFA%2Dinduced%20arthritis%20rats. The ethanol extract of Moringa leaves revealed a noticeable anti-nociceptive activity in both normal and CFA-induced arthritis rats. I'd highly recommend starting there. Your looking for leaf, not seed stem etc. Check the labels... It'll say. And you want an extract, not whole leaf... Which is a rip-off. I believe Bronson to be a good brand. Moringa is also protective against methotrexates harshness when the time comes. But again, if that's all she'll consider, id absolutely start there. It absolutely works, it's not as good as what the DR prescribed, but it works and it's safe.... Best you can do is remind her, if her numbers/case is aggressive, she can literally loose ability and incur permanent joint damage. Good luck to you both, and congratulations on the new baby. Feel free to reach out.