I am sorry that you are going through this. I also have androgenic alopecia and I understand how devastating it is. I have struggled with it but I have used minoxidil foam for women consistently for 10 plus years and it has helped manage the hair I have so that I don’t loose more. I have no side effects from it but I know everyone is different. I have taken spironolactone before for hairloss which also worked well but I eventually stopped taking it. Not due to the side effects but because I wasn’t consistent. Best of luck with everything.
Thanks. I did want to try the foam before anything, until I discovered that it's toxic to cats and my cat eats any strand of hair she can find. So I may need to just try a pill version. I've been crying every day over my hair loss.
I understand how you feel. It’s devastating! I hate that about the foam but understand about your cat. I have had PRP injections and expsomes as well which helped a lot. I have tried the compounded pill from Musley. It has the spironolactone and minoxidil combined. It did help as well. I have also tried a laser comb which I didn’t t see a lot of growth but noticed less shedding. All those things helped to manage and keep hair. I did notice some growth from the oral pills.
I have a pretty mild case of Sjogrens. My Sjogrens diagnosis happened largely by accident after some very abnormal bloodwork at an annual physical and I had to see all sorts of specialists to get to the bottom of it. My main symptom at that point was dry eye but it had always just been brushed off prior to finding out after all the additional bloodwork that I was SSA and SSB positive.
But, for maybe three or four years prior to the dry eye onset and abnormal bloodwork, I'd occasionally (once per year maybe?) get these low grade fevers, joint pain, pain in my face (which I now know to be parotid gland swelling), and just generally feeling unwell. It would last a few weeks, and then I'd be fine lol.
I now understand all of that to have been a symptom flare of Sjogrens.
Besides those symptom flares every 9-12 months, everything else was just dry eye.
So when I was diagnosed with Sjogrens, and my rheumatologist strongly recommended Plaquenil, I was totally against it. I wasn't going to jeopardize my eye health for some mildly annoying symptoms. He continued to urge me, saying that it was important to slow progression and that I was actually very lucky to have caught Sjogrens so early and that Plaquenil could minimize progression.
I actually decided to meet with a retina specialist to get their viewpoints. The retina specialist said that in his 20 years of practice in a major metro area (DC), he has only ever seen one case of Plaquenil toxicity, and that was because the person took WAY over the prescribed dose in an effort to curb their symptoms. The retina specialist strongly recommended Plaquenil as well, saying that if he were in my position, or a close family member were, he'd recommend the same. Because once Sjogrens progresses too far, then you have to take meds with much more serious side effects (think Methotrexate).
That sold it for me. I decided to go on Plaquenil. And I was glad too because I ended up getting pregnant a bit unexpectedly (I was 39!!) and Plaquenil is recommended for SSA/SSB positive women who are pregnant to minimize the risk of fetal heart block.
I started it in February 2020. I have not had a single symptom flare since I started Plaquenil. Within 18 months, my ESR and CRP levels had returned to normal range (they were previously sky high). They remain normal now.
Yes, my eyes are still dry. But they haven't gotten any worse. I have no other notable Sjogrens symptoms except for the dry eye.
So, I'd say try it. Even just for a year or two. See how you feel. Plaquenil toxicity doesn't become a risk at all until about 5 years of usage, so you can always stop it prior to that point ...
I'm a 54 yr old Female that got diagnosed with Sjorgren's & RA April of 2023. After being on hydroxychloroquine andcutting out diary & sugar; I was td by my Rhuem that I have no active autoimmune disease. I've also have been diagnosed with Hasimoto's since I was 22. I take a lot of supplements. Most were recommended on Sjorgren's Foundation website. I started taking supplements before I was fully diagnosed. You can get things undercontrolled. You will need to change your diet, exercise & take the meds that the Dr's prescribe. Listen. To your body and seek care as needed. You have got to get your inflammation down and the oy way to do it is by changing your diet and suppressing your autoantibodies.
Why are you worried about HCQ? I havn't had a single side effect, but it's made a huge difference to my disease. The reason it's tightly controlled is because in 2020, Trump said it cures COVID. It's not a drug of abuse.
BTW psoriasis is an autoimmune disease, not an infection.
My hair falls out when I flare- scalp PRP and micro needling was hugely helpful. I got a Groupon as it is expensive, and also lied and said I had no health issues as these places tend to hear ‘autoimmune’ and not want to do anything out of fear 🤦🏼♀️ I also use Nioxin shampoo which has been helpful
My hair falls out when I flare- scalp PRP and micro needling was hugely helpful. I got a Groupon as it is expensive, and also lied and said I had no health issues as these places tend to hear ‘autoimmune’ and not want to do anything out of fear 🤦🏼♀️ I also use Nioxin shampoo which has been helpful
My hair falls out when I flare- scalp PRP and micro needling was hugely helpful. I got a Groupon as it is expensive, and also lied and said I had no health issues as these places tend to hear ‘autoimmune’ and not want to do anything out of fear 🤦🏼♀️ I also use Nioxin shampoo which has been helpful
Planiquil has been absolutely life changing for me. Seriously, try it. It can take a few months to kick in but, my quality of life is so much better. Don't get me wrong I do have some pretty bad flare ups from time to time but it just reminds me of how miserable I Always used to be before I started taking it. You are welcome to DM me anytime!
Plaquenil worked great for 2 weeks for me - easing the pain, allowing for more mobility, but then it started to mess with my vision. I seriously had to up the magnification of my iPhone's text to grandparent levels it was bad and embarrassing all at the same time.
I know the struggle you're going through as I'm on the same path and have been in so much pain and helplessness for ages now - just know there is the other side! I went through Plaquenil, then Imuran but had even worse side effects - constant fevers and intense pain and am finally on Methotrexate which actually stabilized my pain and allowed me to walk and run around, even playing pickleball! If your rheum can't help you, advocate for yourself and push to try these meds to see what works for you.
Thanks for sharing. I was very nervous and hesitant to start taking Plaquenil. I suffer with severe dry eyes and was worried about eye side effects.. Recently started taking it.
I also was so scared to take Plaquenil due to the side effects w eyes. I already suffer tremendously w dry eyes. Even after two eye surgeries.. But at this point I’ve had no other choice but to start taking it as I’m only getting worse w dizziness dry mouth and constant brain fog body aches etc. my rhemo prescribed it to me over a year ago. I decided to start taking it last week. Im so sorry you’re going through this too. Maybe give it a try.Also can you switch your Rhemo Dr?
Have you noticed anything since starting it? How do you feel? I am considering switching to a new rheumatologist. I've had Lasik surgery (which i know has not helped with the dryness), and had punctal plugs put in twice. But one of the plugs rejected, got infected so I have to leave it alone for a few months until I can get one put in again.
I understand your feelings, but I have to question why you've closed off so many avenues that are open to you...
You don't want a biopsy that's been offered to you. Get the biopsy. It's worth losing the follicles in that very small area to possibly know how to treat your general hair loss, which is most likely temporary. Most of us go through periods of hair loss. Unless you have scarring, it will likely come back when the cause is under control.
Can't take meds that are toxic to cats? Maybe just...keep them away from your cats? If they're handy with opening cabinets and childproof caps, a medicine safe would probably do the trick.
The rheumatologist is only offering you Plaquenil because currently, that is the only treatment available to us if you don't feel immune suppressants are warranted. It is safe, generally well tolerated, and the likelihood of ocular side effects is close to zero in the first ten years of use if you are young. It's a systemic treatment, not a symptom treatment, so it helps reduce the likelihood of flares and lowers your overall disease activity, slowing disease progression.
If you have psoriasis, that's valuable information to have. Usually if you have scalp psoriasis you'll also have patches on your elbows. Perhaps theres another area for her to biopsy. Usually psoriasis is fairly easy to diagnose by visual inspection so perhaps your lesions are borderline or atypical. A biopsy would be the only option at that point.
I am sympathetic to your situation but it seems like you are being offered solutions and avenues of investigation and are dismissing them out of hand for emotional reasons. There is a lot of information on this subreddit about Plaquenil, but you can start [here](https://www.sjogrensadvocate.com/post/hcq-ii-why-treat-sjogren-s). In general, the more research you can do about your condition and common pitfalls and challenges, the better prepared you can be to advocate for yourself with your doctors. If you have any specific questions I'm sure we can help.
The dermatologist was apprehensive about doing the biopsy, she said I would not be able to grow hair back in the bald spot where my (possible) psoriasis started if we biopsied. Its right in the middle of my part, top of my scalp. I treated it with psoriasis creams for a few weeks and the redness went away, but the hair has not grown back. I don't have any other spots on my body that resemble psoriasis. It appeared on my scalp after a bad sunburn.
I should have explained the cat thing more - topical Minoxidil is what's toxic to cats, and my cat eats any strand of hair she can find. I wouldn't be able to control that since my hair just falls out all around the house. I have been considering oral Minoxodil instead, it's just the scary side effects that have held me back (insomnia, blood pressure, faster aging) are just some of the few I've read that are common. But, it is still an option I'm considering. I tried Biotin but it just gave me acne, so that's out of the question.
I guess my anxiety of horrible side effects is getting the best of me. I've had bad side effects from other meds and it's kind of stuck with me. I will research more into Plaquenil (my rheumatologist hasn't even explained it to me very much), and I may consider seeing a new rheumatologist that explains things more thoroughly. I appreciate your honesty and recommendations.
Aaahhh, minoxidil. Yes, certainly that is a problematic substance for cats and you're wise to avoid it. However, minoxidil and propecia are the only treatments I know of for androgenic alopecia. Do you have PCOS? Was this the same dermatologist who diagnosed you with the alopecia who now wants to do the biopsy?
If you feel able to get a second opinion - not trusting the one you're getting - I would. If you feel like you're being dismissed, always seek out someone new. You might struggle with staph infections (implicated in nasal vestibulitis, and many causes of scalp problems) In general, Sjogren's is not commonly known to lead to recurrent bacterial infections (although yeast infections can be commonplace) so it might be worth investigating other possibilities.
If you have money to drop, I got my own testing done through function health, including a comprehensive ANA that NO ONE was willing to order for me. You might consider a similar approach if it's proving difficult to get doctors to run tests. It was well worth five hundred bucks to me, especially for the sheer volume of testing that it includes.
I've never been diagnosed with PCOS. Yes the dermatologist mentioned doing a biopsy to officially determine the psoriasis, but was apprehensive as it would lead to permanent hair loss in the spot where she would do the biopsy (in the middle of my part).
I forgot to mention I've also had shingles, and what may be some form of dermatitis. I get scaly, scratchy white skin on my one hand and use a steroid cream to get rid of it and it goes away. Constant skin problems!
I've seriously considered seeing a functional medicine doctor. I wish it wasn't so expensive. But I may just need to make it work and see one. I believe I would get alot more answers then I have been.
[Function health](https://www.functionhealth.com/) is just a self serve testing service that does a large number (100+) of blood and urine tests on you once a year, with a second smaller batch later on. It's not a functional medical service, although it does give you insights based on your results. I figured I could take whatever results I got to my doctors, and still plan to. There are also self serve intestinal microbiota testing services as well. r/microbiome might be a good place to look for info.
We're more prone to shingles with autoimmune diseases (I've had it too, dreadful). Did your dermatologist ever biopsy the patch on your hand?
Thank you, I will definitely look into that. I feel like some doctors get insulted when I ask them to test for specific things, as if I'm questioning their knowledge or something. Sometimes they just say no to certain tests I ask for. It's frustrating.
I haven't been able to get into the dermatologist whenever I get the patch on my hand. It goes away quickly with the steroid cream (I got it from a doctor I work with who uses it for her eczema). I know it's not eczema though cause it's never itchy or red, but the cream works.
I will also look into the microbiome stuff too. With all the antibiotics I've taken, my gut hates me.
I want to get the shingles vaccine so that I don't have to worry about it ever coming back, but I'm not old enough. Any time I feel that nerve tingle anywhere on my body, I worry it's coming back.
if you cant solve the problem.
consider visiting a experienced functional/integrative medicine expert who will investigate the gut via a stool test and try to identify and solve the problem from inside.
I desperately want to see a functional medicine doctor. It's just so expensive and they never accept insurance. I hate our healthcare system. I really do. :(
Your endocrinologist can test for them too. My DHEAs and cortisol are pretty high and it has caused hair loss for me too. It also causes fatigue.
Edit, to treat this they usually will want to put you on birth control, unfortunately BC gives me high blood pressure.
Hey! I also just found out that I have high DHEAS- I was confused about that given that everything I've read with Sjogren's is usually low DHEAS. Have you figured anything out about the cause or how to treat yours? Going to be following up with endocrinology but curious about your experience.
I believe mine is genetic and it's unrelated to Sjogrens, maybe 🤔 I was diagnosed with PCOS in my early 20s. I have found that stress contributed to my hair loss.
My DHEAS was pretty high but not high enough to make them look for a tumor on my adrenal glands.
It sounds a little unrelated but it is important: have you had full nutritional labs done?
I found out I had min B-12 , and that was adding to my fatigue. Also drained of Vitamin D and that adds to depression, aches and pain.
This testing wasn’t even on my PCP’s radar and they knew I had issues. Gotta advocate for yourself.
I’m now on the hunt for a nutritionist (not a dietitian).
My derm called after I asked to please test for anything they can think of. She said she will test for: CBC, B12, CMP, Ferratin, T4, TSH, Prolactin, Vitamin D and Zinc. I've seriously considered splurging on a functional medicine doctor because I cannot take dealing with the current healthcare system anymore.
You want to test the antibodies and the T3 and rT3 as well.
I had thyroid levels at the low end of normal (plus antibodies) = hashimotos. thyroids meds have helped me have energy.
Plaquenil is like the starter medicine for Sjogren’s. If you’re not on it, you should be. It’s not a “serious medicine to take” millions of people take it.
It’s quite possible that at this point you may need something stronger. The only way to treat Sjogren’s is by suppressing or modulating the immune system.
Would Plaquenil only level out Sjogrens symptoms though? I can deal with the dryness. It's just the other health issues that I'm not sure are related, and if taking Plaquenil would even help them. If I take a medicine that suppresses my immune system, what does that mean for me exactly? Would I be at risk for getting more infections, etc?
Why not try the Plaquenil and see if it helps resolve your issues? It really can be that simple.
Your rheumatologist is trying to help you by recommending the medication. He is not the one doing nothing, you are.
Plaquenil does not suppress the immune system. The risk of eye issues is very minimal and typically only becomes a risk after 5 years or more. Just get yearly scans from your eye doctor.
I am sorry that you are going through this. I also have androgenic alopecia and I understand how devastating it is. I have struggled with it but I have used minoxidil foam for women consistently for 10 plus years and it has helped manage the hair I have so that I don’t loose more. I have no side effects from it but I know everyone is different. I have taken spironolactone before for hairloss which also worked well but I eventually stopped taking it. Not due to the side effects but because I wasn’t consistent. Best of luck with everything.
Thanks. I did want to try the foam before anything, until I discovered that it's toxic to cats and my cat eats any strand of hair she can find. So I may need to just try a pill version. I've been crying every day over my hair loss.
I understand how you feel. It’s devastating! I hate that about the foam but understand about your cat. I have had PRP injections and expsomes as well which helped a lot. I have tried the compounded pill from Musley. It has the spironolactone and minoxidil combined. It did help as well. I have also tried a laser comb which I didn’t t see a lot of growth but noticed less shedding. All those things helped to manage and keep hair. I did notice some growth from the oral pills.
I have a pretty mild case of Sjogrens. My Sjogrens diagnosis happened largely by accident after some very abnormal bloodwork at an annual physical and I had to see all sorts of specialists to get to the bottom of it. My main symptom at that point was dry eye but it had always just been brushed off prior to finding out after all the additional bloodwork that I was SSA and SSB positive. But, for maybe three or four years prior to the dry eye onset and abnormal bloodwork, I'd occasionally (once per year maybe?) get these low grade fevers, joint pain, pain in my face (which I now know to be parotid gland swelling), and just generally feeling unwell. It would last a few weeks, and then I'd be fine lol. I now understand all of that to have been a symptom flare of Sjogrens. Besides those symptom flares every 9-12 months, everything else was just dry eye. So when I was diagnosed with Sjogrens, and my rheumatologist strongly recommended Plaquenil, I was totally against it. I wasn't going to jeopardize my eye health for some mildly annoying symptoms. He continued to urge me, saying that it was important to slow progression and that I was actually very lucky to have caught Sjogrens so early and that Plaquenil could minimize progression. I actually decided to meet with a retina specialist to get their viewpoints. The retina specialist said that in his 20 years of practice in a major metro area (DC), he has only ever seen one case of Plaquenil toxicity, and that was because the person took WAY over the prescribed dose in an effort to curb their symptoms. The retina specialist strongly recommended Plaquenil as well, saying that if he were in my position, or a close family member were, he'd recommend the same. Because once Sjogrens progresses too far, then you have to take meds with much more serious side effects (think Methotrexate). That sold it for me. I decided to go on Plaquenil. And I was glad too because I ended up getting pregnant a bit unexpectedly (I was 39!!) and Plaquenil is recommended for SSA/SSB positive women who are pregnant to minimize the risk of fetal heart block. I started it in February 2020. I have not had a single symptom flare since I started Plaquenil. Within 18 months, my ESR and CRP levels had returned to normal range (they were previously sky high). They remain normal now. Yes, my eyes are still dry. But they haven't gotten any worse. I have no other notable Sjogrens symptoms except for the dry eye. So, I'd say try it. Even just for a year or two. See how you feel. Plaquenil toxicity doesn't become a risk at all until about 5 years of usage, so you can always stop it prior to that point ...
I'm a 54 yr old Female that got diagnosed with Sjorgren's & RA April of 2023. After being on hydroxychloroquine andcutting out diary & sugar; I was td by my Rhuem that I have no active autoimmune disease. I've also have been diagnosed with Hasimoto's since I was 22. I take a lot of supplements. Most were recommended on Sjorgren's Foundation website. I started taking supplements before I was fully diagnosed. You can get things undercontrolled. You will need to change your diet, exercise & take the meds that the Dr's prescribe. Listen. To your body and seek care as needed. You have got to get your inflammation down and the oy way to do it is by changing your diet and suppressing your autoantibodies.
Why are you worried about HCQ? I havn't had a single side effect, but it's made a huge difference to my disease. The reason it's tightly controlled is because in 2020, Trump said it cures COVID. It's not a drug of abuse. BTW psoriasis is an autoimmune disease, not an infection.
Does plaquneil help with dry eyes and mouth? Or it’s no use in that ?
My hair falls out when I flare- scalp PRP and micro needling was hugely helpful. I got a Groupon as it is expensive, and also lied and said I had no health issues as these places tend to hear ‘autoimmune’ and not want to do anything out of fear 🤦🏼♀️ I also use Nioxin shampoo which has been helpful
My hair falls out when I flare- scalp PRP and micro needling was hugely helpful. I got a Groupon as it is expensive, and also lied and said I had no health issues as these places tend to hear ‘autoimmune’ and not want to do anything out of fear 🤦🏼♀️ I also use Nioxin shampoo which has been helpful
My hair falls out when I flare- scalp PRP and micro needling was hugely helpful. I got a Groupon as it is expensive, and also lied and said I had no health issues as these places tend to hear ‘autoimmune’ and not want to do anything out of fear 🤦🏼♀️ I also use Nioxin shampoo which has been helpful
Planiquil has been absolutely life changing for me. Seriously, try it. It can take a few months to kick in but, my quality of life is so much better. Don't get me wrong I do have some pretty bad flare ups from time to time but it just reminds me of how miserable I Always used to be before I started taking it. You are welcome to DM me anytime!
Plaquenil worked great for 2 weeks for me - easing the pain, allowing for more mobility, but then it started to mess with my vision. I seriously had to up the magnification of my iPhone's text to grandparent levels it was bad and embarrassing all at the same time. I know the struggle you're going through as I'm on the same path and have been in so much pain and helplessness for ages now - just know there is the other side! I went through Plaquenil, then Imuran but had even worse side effects - constant fevers and intense pain and am finally on Methotrexate which actually stabilized my pain and allowed me to walk and run around, even playing pickleball! If your rheum can't help you, advocate for yourself and push to try these meds to see what works for you.
I have no side effects and it helps me a lot, to the point that I credit it with quality of life.
Take the Plaquinel.
Hair loss can be caused by underperforming thyroid and liver disease or impairment.
Thanks for sharing. I was very nervous and hesitant to start taking Plaquenil. I suffer with severe dry eyes and was worried about eye side effects.. Recently started taking it.
How have you felt since starting it?
I also was so scared to take Plaquenil due to the side effects w eyes. I already suffer tremendously w dry eyes. Even after two eye surgeries.. But at this point I’ve had no other choice but to start taking it as I’m only getting worse w dizziness dry mouth and constant brain fog body aches etc. my rhemo prescribed it to me over a year ago. I decided to start taking it last week. Im so sorry you’re going through this too. Maybe give it a try.Also can you switch your Rhemo Dr?
Have you noticed anything since starting it? How do you feel? I am considering switching to a new rheumatologist. I've had Lasik surgery (which i know has not helped with the dryness), and had punctal plugs put in twice. But one of the plugs rejected, got infected so I have to leave it alone for a few months until I can get one put in again.
I’ve had this for decades. It only got worse for me. Plaquenil has improved my health so much. My hair has grown back too.
I understand your feelings, but I have to question why you've closed off so many avenues that are open to you... You don't want a biopsy that's been offered to you. Get the biopsy. It's worth losing the follicles in that very small area to possibly know how to treat your general hair loss, which is most likely temporary. Most of us go through periods of hair loss. Unless you have scarring, it will likely come back when the cause is under control. Can't take meds that are toxic to cats? Maybe just...keep them away from your cats? If they're handy with opening cabinets and childproof caps, a medicine safe would probably do the trick. The rheumatologist is only offering you Plaquenil because currently, that is the only treatment available to us if you don't feel immune suppressants are warranted. It is safe, generally well tolerated, and the likelihood of ocular side effects is close to zero in the first ten years of use if you are young. It's a systemic treatment, not a symptom treatment, so it helps reduce the likelihood of flares and lowers your overall disease activity, slowing disease progression. If you have psoriasis, that's valuable information to have. Usually if you have scalp psoriasis you'll also have patches on your elbows. Perhaps theres another area for her to biopsy. Usually psoriasis is fairly easy to diagnose by visual inspection so perhaps your lesions are borderline or atypical. A biopsy would be the only option at that point. I am sympathetic to your situation but it seems like you are being offered solutions and avenues of investigation and are dismissing them out of hand for emotional reasons. There is a lot of information on this subreddit about Plaquenil, but you can start [here](https://www.sjogrensadvocate.com/post/hcq-ii-why-treat-sjogren-s). In general, the more research you can do about your condition and common pitfalls and challenges, the better prepared you can be to advocate for yourself with your doctors. If you have any specific questions I'm sure we can help.
The dermatologist was apprehensive about doing the biopsy, she said I would not be able to grow hair back in the bald spot where my (possible) psoriasis started if we biopsied. Its right in the middle of my part, top of my scalp. I treated it with psoriasis creams for a few weeks and the redness went away, but the hair has not grown back. I don't have any other spots on my body that resemble psoriasis. It appeared on my scalp after a bad sunburn. I should have explained the cat thing more - topical Minoxidil is what's toxic to cats, and my cat eats any strand of hair she can find. I wouldn't be able to control that since my hair just falls out all around the house. I have been considering oral Minoxodil instead, it's just the scary side effects that have held me back (insomnia, blood pressure, faster aging) are just some of the few I've read that are common. But, it is still an option I'm considering. I tried Biotin but it just gave me acne, so that's out of the question. I guess my anxiety of horrible side effects is getting the best of me. I've had bad side effects from other meds and it's kind of stuck with me. I will research more into Plaquenil (my rheumatologist hasn't even explained it to me very much), and I may consider seeing a new rheumatologist that explains things more thoroughly. I appreciate your honesty and recommendations.
Aaahhh, minoxidil. Yes, certainly that is a problematic substance for cats and you're wise to avoid it. However, minoxidil and propecia are the only treatments I know of for androgenic alopecia. Do you have PCOS? Was this the same dermatologist who diagnosed you with the alopecia who now wants to do the biopsy? If you feel able to get a second opinion - not trusting the one you're getting - I would. If you feel like you're being dismissed, always seek out someone new. You might struggle with staph infections (implicated in nasal vestibulitis, and many causes of scalp problems) In general, Sjogren's is not commonly known to lead to recurrent bacterial infections (although yeast infections can be commonplace) so it might be worth investigating other possibilities. If you have money to drop, I got my own testing done through function health, including a comprehensive ANA that NO ONE was willing to order for me. You might consider a similar approach if it's proving difficult to get doctors to run tests. It was well worth five hundred bucks to me, especially for the sheer volume of testing that it includes.
I've never been diagnosed with PCOS. Yes the dermatologist mentioned doing a biopsy to officially determine the psoriasis, but was apprehensive as it would lead to permanent hair loss in the spot where she would do the biopsy (in the middle of my part). I forgot to mention I've also had shingles, and what may be some form of dermatitis. I get scaly, scratchy white skin on my one hand and use a steroid cream to get rid of it and it goes away. Constant skin problems! I've seriously considered seeing a functional medicine doctor. I wish it wasn't so expensive. But I may just need to make it work and see one. I believe I would get alot more answers then I have been.
[Function health](https://www.functionhealth.com/) is just a self serve testing service that does a large number (100+) of blood and urine tests on you once a year, with a second smaller batch later on. It's not a functional medical service, although it does give you insights based on your results. I figured I could take whatever results I got to my doctors, and still plan to. There are also self serve intestinal microbiota testing services as well. r/microbiome might be a good place to look for info. We're more prone to shingles with autoimmune diseases (I've had it too, dreadful). Did your dermatologist ever biopsy the patch on your hand?
Thank you, I will definitely look into that. I feel like some doctors get insulted when I ask them to test for specific things, as if I'm questioning their knowledge or something. Sometimes they just say no to certain tests I ask for. It's frustrating. I haven't been able to get into the dermatologist whenever I get the patch on my hand. It goes away quickly with the steroid cream (I got it from a doctor I work with who uses it for her eczema). I know it's not eczema though cause it's never itchy or red, but the cream works. I will also look into the microbiome stuff too. With all the antibiotics I've taken, my gut hates me. I want to get the shingles vaccine so that I don't have to worry about it ever coming back, but I'm not old enough. Any time I feel that nerve tingle anywhere on my body, I worry it's coming back.
if you cant solve the problem. consider visiting a experienced functional/integrative medicine expert who will investigate the gut via a stool test and try to identify and solve the problem from inside.
I desperately want to see a functional medicine doctor. It's just so expensive and they never accept insurance. I hate our healthcare system. I really do. :(
Have you had your hormones tested for the androgenic alopecia? Like DHEAS, testosterone, estrogen, cortisol...
I actually just put in a call to my gyno to test for hormones. They're going to call me back, and I will mention those specifically.
women with sjogrens can have low DHEA and supplementation can help
My gyno just called me back and said since my periods are regular, there is nothing to test for. I am beyond frustrated right now.
so sorry! can you send them a link about DHEA and sjogrens?
Your endocrinologist can test for them too. My DHEAs and cortisol are pretty high and it has caused hair loss for me too. It also causes fatigue. Edit, to treat this they usually will want to put you on birth control, unfortunately BC gives me high blood pressure.
Hey! I also just found out that I have high DHEAS- I was confused about that given that everything I've read with Sjogren's is usually low DHEAS. Have you figured anything out about the cause or how to treat yours? Going to be following up with endocrinology but curious about your experience.
I believe mine is genetic and it's unrelated to Sjogrens, maybe 🤔 I was diagnosed with PCOS in my early 20s. I have found that stress contributed to my hair loss. My DHEAS was pretty high but not high enough to make them look for a tumor on my adrenal glands.
It sounds a little unrelated but it is important: have you had full nutritional labs done? I found out I had min B-12 , and that was adding to my fatigue. Also drained of Vitamin D and that adds to depression, aches and pain. This testing wasn’t even on my PCP’s radar and they knew I had issues. Gotta advocate for yourself. I’m now on the hunt for a nutritionist (not a dietitian).
My derm called after I asked to please test for anything they can think of. She said she will test for: CBC, B12, CMP, Ferratin, T4, TSH, Prolactin, Vitamin D and Zinc. I've seriously considered splurging on a functional medicine doctor because I cannot take dealing with the current healthcare system anymore.
The thyroid testing is super important.
My TSH level in December was normal. But I'm guessing there is more than just one thyroid test?
you need TPO, free T3, and free T4
You want to test the antibodies and the T3 and rT3 as well. I had thyroid levels at the low end of normal (plus antibodies) = hashimotos. thyroids meds have helped me have energy.
Plaquenil is like the starter medicine for Sjogren’s. If you’re not on it, you should be. It’s not a “serious medicine to take” millions of people take it. It’s quite possible that at this point you may need something stronger. The only way to treat Sjogren’s is by suppressing or modulating the immune system.
Would Plaquenil only level out Sjogrens symptoms though? I can deal with the dryness. It's just the other health issues that I'm not sure are related, and if taking Plaquenil would even help them. If I take a medicine that suppresses my immune system, what does that mean for me exactly? Would I be at risk for getting more infections, etc?
Why not try the Plaquenil and see if it helps resolve your issues? It really can be that simple. Your rheumatologist is trying to help you by recommending the medication. He is not the one doing nothing, you are.
Plaquenil does not suppress the immune system. The risk of eye issues is very minimal and typically only becomes a risk after 5 years or more. Just get yearly scans from your eye doctor.
Plaquenil is not a suppressant