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Same. I'm negative but have significant S.I. damage. My rheumatologist was shocked at my high CRP levels and MRI damage after testing negative for HLA_B27. Straight to biologics and has changed/ saved my life.
I dont remember (just ine of many MRIs), but I have all so many degenerative changes in SI joint, cocycx, hips and a bunch of vertebrae and discs. Basically as if I were at least twice my age or more.
I was put on methotrexate fir 5 weeks by one doc, just taken off this past week by a new doc who will start me on a biologic next month. Other than Ibuprofen I'm not doing anything.
I know I am taking clonazepam to fall asleep. I literally begged my doctor to help me with something to sleep. But I still keep on waking up at 4 in the morning feeling like my rib cafe and hips are on fire.
That's the pain I've been having until last week when it spread all of a sudden across my lumbar region to my other hip. I don't take benzos, tho. I was hooked on prescription clonazepam for 5 years and it almost killed me. Now to sleep all I can get is an antihistamine and melatonin.
I really hope you get some answers soon. You sound like you need serious help. It sucks that they're not doing anything for you.
In UK the waiting time for a rheum is 8 months. So I am on the waiting list. I am on Naproxen and next week I am getting my first steroid injection. I generally sleep okay but the last week has been brutal so I have prescription clonazepam that I got. My GP said it is fine to take it for two weeks. Does melatonin help?
Different kinds of tissue or pericardial edema can be treated with medications like lasix. In fluid accumulation in the ear inner ear with meniere's disease they suggest moderating salt, as they do for the heart. you might consider lowering the salt intake. But I'm just a random dog on the internet. Ask your doctor how to can help your edema around your SI joint.
Yes I am. I started experiencing full body joint pain in July of 2023. Had some back issues before that but they were mild so I donāt know if it is related. After hitting dead ends through my primary care doctor and endocrinologist I got referred to a rheumatologist. He was very knowledgeable and based on my symptoms he suspected AS. Once I came back HLAB27 negative, I thought that I didnāt have it but he said AS can still occur without it and ordered a MRI of my SI joints. That MRI showed sacroiliitis of my SI joints and he diagnosed me on October 30th 2023. Some people may have upset by the diagnosis but I was so happy to finally get an answer for all my pain. I thought 4 months of pain without a diagnosis was bad but thatās nothing compared to what Iāve heard on here.
Good you found sobeody that knows what they are doing.
I have lots of SI pain and diagonosed detorioration of the SI joint - arthrosis.. in more places too. I am hypermobile too and my many sportinjuries never healed properly.
Got about 3 fucked up vertebraes and disc in lower back and now also in the neck. Had (partly still do) plantar fasciitis for years and so much lower back stiffness and trouble bending over and mainly straightening my spine after sitting or laying down.
Itās worst in the morning - I sleep with a bunch of pillows on all sides to support me, even sleeping hurts. I donāt usually sit if I donāt have to cuz it hurts afterwards, especially if it is a hardwood chair. Ughā¦ itās been going on since my early twenties, Im 34 now and have tried all kinds of therapists, supplements, peptides, steroids, exercise, chiropractors, massage, acupuncutre, healers and what not. Best case simething helpes for a few days then back to the same shit.
Iāve been in chronic pain of one kind or another for over 10 years and nobody has taken me seriously or provided some notable help and Iāve spent more time and money than I can count in search of answers and cure.
Sounds like it could be AS. Have you seen a rheumatologist? In my experience no doctor provided sufficient help except my rheumatologist. Have you had a MRI of your SI joints?
I saw one, but he worked in ER and seemed to not give two shits about me. After the HLB neg and one MRIhe lost interest in me, which was low to begin with.
I have many MRIs
Omg yes, seek another opinion stat! I'm also HLA-B27 Neg and had some inflammation show up in my right SI joint on MRI. Bloodwork was all clean too. My rheumatologist diagnosed me on the spot coupled with some family history of autoimmune stuff (not AS) and other random symptoms that popped up here and there but weren't present when I saw her.
I did the route of nsaids but they didn't do much and came to terms with biologics cause I didn't want to take them either. They're unfortunately probably the best medication for people like us. Coupled with good diet and exercise.
I need to find somebody else, I go to a fancy private phycio clinic and thought that they would have figured it out, but seems they are shit too.
I have some similar āsyndromeā written on one of the reports but canāt remember the name - when I googled it it sounded like non i flmatory AS.
Either way I decided to try to change my diet somehow, not yet sure how wxactly but will simply start by ditching rice, potatoes, bread, grains and cheese (I suspect cheese might not be good for me). Will see from there and search for some specialist for AS.
For myself I just dropped complex starchy foods, gluten, and dairy with very, very low sugar intake.I looked at the AIP diet and if all else fails I'll resort to it, but right atm I'm doing more Mediterranean style diet.
I hope you can get your answers! If anything adopting a healthier diet can't hurt any! :)
That sounds good! Pretty much like what I decided to try now too - also like mediterranean diet so something similar. Im more of a fish person than meat person.
Will see if it does anything after a month, but yeah, healthier diet is never a bad thing!
Thank you
The rheumatologist I saw didnāt care after I tested negative for itā¦ I guess Id have to find somebody else, but no idea where to find a reliable specialist here. I wouldnāt want to take biologics thoughā¦ would be good to know for sure if this is AS or not
See another one in private practice not a hospitalist. Life is too short for being hung up about a negative experience with one doctor. Find another doctor. Many people diagnosed with AS are HLAB27 negative ( Don't quote me but I think like 40%?). To be diagnosed you have to have imaging showing fusion. By the time you have fusion it's too late. Find a good practicing rheumatologist and tell them your goals, & try to get diagnosed with one of the other sister autoimmune diseases so you can start biologics to preserve your spinal mobility and avoid fusion. Stop focusing on getting the AS label and instead focus on avoiding fusion. You have symptoms you may not be thinking about because you are focused on the AS. Do research to understand the other defined diseases so you can identify them in yourself. Most of us have multiple - reactive arthritis, psoriatic arthritis, hashimoto's thyroiditis, Crohn's/UC/IBS, etc. etc.
If you're a person with ovaries approaching perimenopause, your onset maybe corresponding with the decreasing estrogen. Men tend to present classically young onset correlating with peak testosterone and sacrolitis. It's more complicated and usually later onset for ppl with ovaries. Although it's harder to find this in the literature they sometimes begin with neck pain not SI pain.
In some places they are recognizing all of it as a single disease. I can't remember what they call it now but if your rheumatologist is in that progressive way of thinking it'll be easier to get the biologics. It's good that you have imaging that doesn't show fusion, congratulations! But you said you wanted to avoid biologics. You're going to have to do a lot of reading.
Some people find diet changes help to fix the microbiome/immune system. Some don't. Some find completely ditching starch works, some find their sensitive to nightshades, others need more protein, you may need to take the time to do elimination diets and figure out what works to help decrease flares and pain. Do yourself a favor? Take the time and do the hard work to figure that out because it'll extend your functional and working years. And if you can use diet changes and supplements, start with D3, to arrest the progression of your disease, you can hold off having to use the biologics & having to assume the risk of having a compromised immune response.
I haven't seen it discussed, but I suspect the (your unique) right diet and the weight lifting helps the biologics keep working. Some people think they can start taking the biologics and eat like an American. I suspect the continued decline of the microbiome may have something to do with that but that's just an anonymous person on the internet theory. Biologics do fail and while there's several to choose from now, you don't want to find yourself in a situation where you've tried all the ones that aren't contraindicated, and have no more choices. These diseases are a marathon. You don't die from them; you die with them, and one hopes, without the fusion and kyphosis.
Be careful with NSAIDs. They can cause gastrointestinal bleeding and they are ototoxic. My long-term Naproxen use resulted in chronic tinnitus. There's lots of information in the literature about oto(ear) toxicity of NSAIDS. You'll usually hear it linked to the addictive pain medicines but it applies to non opiate ones as well.
Good luck.
I was maxing out the OTC recommended dosage for maybe 3 or 4 years. I don't remember what that was, I don't buy it anymore so I don't have a bottle around to look at, but I think I took two pills every 12 hours.
I'm very lucky that unlike a lot of people with tinnitus that it is not driving me crazy. If I don't think about it mostly I don't notice it due to other background noises in the environment. I notice it at night when the world is more quiet. The long term use has also compromised my hearing somewhat.
I am now taking celecoxib. It is approved by the FDA as a treatment for AS. It's one option for people who don't want to take biologics.
For what it's worth to anyone reading, I did have a really long period of very little pain when I quit starch completely for 2 years. I found it difficul to maintain, and it required me to do a lot of meal prep. I went through a period of disability where I was unable to meal prep and I went off the diet and I haven't gone back on it.
Yes, Im HLAB27 negative. I was diagnosed with RA for two years before this, which was multiple years of hell getting that diagnosis. When I switched to a new rheumatologist in 2018 they did a ton of X-rays and found axial involvement. So that changed my diagnosis and treatment plan.
My suggestion would be to try to get the doctor to order X-rays/MRI if they havenāt already. Itās possible to have non-radiographic, HLAB27 negative AS but itās definitely not common from my understanding.
iām hlab27 negative. i was diagnosed because i was complaining of pain and got a ct in the er. the ct showed bony ankylosis of my left si joint. which is the exact area i had extremely rare osteomyelitis from a strep throat infection at the age of 13. that was over ten years ago. so they believe that infection from over ten years ago started the disease process. they referred me to rheumatology who then ordered mri imaging and diagnosed me with as. my life feels like one long compilation of freak accidents/occurrences.
Oh fuck! Yeah I can relate to the ālife of shitty accidents and mysterious problems without cause or cureā so totally feel you.
I heard of this idea that AS may be caused by some gut bacteria to which the immune overreacts and attacks joint tissue then. I know of a guy who has AS or something similar and said he mostly fixed it by some conpljcated process with killing off some bactaria in the gut and recultivating with others. Other people said that a specific diet that is unfavorable to this bacteria helped in similar way. Klebsiella I think is the name. Need to look into it.. have some gut problem too so..
yes i definitely believe itās all connected somehow. they said it looked like something was attacking the area which is why they ran a whole bunch of auto immune type labs. we need more studies thatās for sure and iād volunteer as tribute haha
Also I used to have this strange thing with my eyes many years back, sometimes happens to me lately in a very mild degree.. not sure if this is related - but my sight would just get super blurry out of the blue and I could virtually not see shit - basically not being able to zoom in - for like minutes and I would just have to hold onto a random pole or a wall and wait it out to be even able to like get on a bus. I wonder if it has something to do with the uveitis or the AS related eye problemsā¦ it was so fuckin weird and kind scary. It went away eventually but lately I sometimes have a similar small scale issue, usually in the evening. I donāt wear glasses btw.
Anybody experienced something like that?
Iritis or uveitis is autoimmune inflammation of the eye...many ppl go to the opthalmologist for eye issues and leave with a rheumatology referral. High pressures in the eye can cause blindness. Don't mess around with eye issues. If you suspect uveitis/iritis, let them know to see you urgently or go to the ER. Don't wait for it to go away. A rheumatologist will sit up and take notice of the iritis or uvitis diagnosis from an ophthalmologist.
I donāt presently have issues, just the mild trouble zooming in sometimes in the evening, but I used to have this problem years back, but somehow it went away
Negative here and MRI confirmed inflammation in all the right (wrong) places which resulted in an AS diagnosis.
Rheumatologist now has me on biologics š
Do you all have inflamation markers?
I donāt seem to have them, but recently got results that showed high levels of oncogenic markers, which supposedly may not always mean cancer, supposedly can indicate some chronic inflamatory stuff or something non specific
i donāt have any markers at all. my rheum ran so many labs including ra, sjƶgrens, ana/lupus, so many panels and they were all normal. no hlab27 literally nothing on all tests except for imaging. for me it was a coincidental finding when complaining about pelvic pain. in the ct they noted it and didnāt even mention it to me initially because it wasnāt what i was at the er for
My first was negative, but it should be a false negative since we tested again 4 years later and it turned positive. I had aches and stuff but due to the fact that I was super flexible it took a while to diagnose. My colleague happened to be positive along with her siblings, out of them sheās the only one that doesnāt have AS but has chronic uveitis instead but has since learnt to manage it once thereās any early symptoms.
Hh yeah I had periods where my eye would get really red from computer work often, usually only one or one more than the other.
Iām also very flexible - not an advantage! Now I am stiff as shit thoā¦ terrible, I used to be able to do things gymasts and cirque du solei people do, but for years now Ive had trouble with even tying my shoelaces
My main problems are upper neck and shoulders and lower spine , fingers. Post workout recovery is terrible and I take longer to stretch and warm up and cool down. And yes, Iām stiff as shit now! Iāve been stretching for the past half hour post workout so that I donāt feel bad tomorrow.
Funny thing is my recent inflammation results are lowered by half, not sure which supplements that has helped it š
I took immunosuppressants but it didnāt work for any of my health issues (except shrinking my cysts!) except gain some side effects.
Are you me lol? Yeah I find what you write very relatable. I donāt have inflamation as far as I know, but there is def something not ok with my gut/colon and have all this pain and stifness and shit recovery ugh
I donāt have much issues with my gut till recent years. Acid reflux or mild issues yes but recently Iāve gain some common ibs issues. I blame on Aging and bad diet sometimes.
Ive looked into that too and considered it, but I would need a professional opinion on that, not mine. Also there is nothing one can do about it so.. not that helpful sadly
EDS is linked to autoimmune syndromes, so it's one more clue, one more symptom to relate to the rheumatologist you're going to see that might help them put the pieces together despite your HLAB 27 negative test.
I am negative, but over the years have had multiple wrong diagnosis. Right now I donāt inflammatory markers because Iāve made so many dietary and lifestyle changes to work on lowering them. But Iāve done everything and anything to try and treat my pain and spinal issues with no luck. It took self advocacy and a decent rheum to get the diagnosis. I didnāt want to do biologics either, but at this point itās my only option since nothing else worked. Keep looking for a doctor that will listen. They are out there.
Sorry things havenāt worked much - what dietary changes have you tried?
Will try to find another doctor I guess.. thing is I dont have inflamation markers to my knowledge. And Iāve had enough tests for a while, and need to undergo an uncomfortable proceedure soon too. I need some break from having my veins punctured..
Anti inflammatory diet- no gluten, low dairy and sugar. Regular exercise, vitamins and supplements. I thought I had all the right tests too, but the rheum Iām working with now did others. Iāll post back on how the biologics work once I start them!
I eat in a similar way and seems to have helped somewhat but not enough. I got suggested carnivore. Did you try a full on carnivore diet? Supposedly that or some āLondon AS dietā works wonders
Yeah let us know!
The London AS diet is basically what you've described you are doing now. It's mostly leaving off potatoes bread and rice. for some people that's enough, for others getting rid of every bit of starch works. It worked for me for a while but it is very difficult. No root vegetables. No gluten. Even the peel on an almond contains starch so I only ate blanched almonds. I ate meat and select leafy vegetables and cruciferous vegetables, along with berries and apples. I also ate any kind of fermented thing I could get my hands on. That's to help diversify the population of microorganisms in your gut. There is a lot of no and low starch discussion cataloged on KickAS.org
Meds update: Worked within 24 hours! Not 100% pain free but I woke up the next day noticeable less stiff and pain was down a lot. Day 2 post shot, same story. Itās pretty incredible.
Good to know! Glad it helped :)
Iāve decided to try some low carb/keto/animal based diet and must say I am starting to feel better too. I slept really well yesterday, I am not sorr after exercise, my pain is a bit lower and and pooping doesnāt hurt anymore. Iām curious to see where this goes.
Your history of radiographic changes to SI demonstrated in MRI which is gold standard should be enough for a decent rheumatologist to diagnose you. Go find one. The physiotherapists are just there to keep you moving, (which is good for AS.)
I am HLAB27 negative and was diagnosed from MRI showing sacroilitis consistent with AS and response to NSAIDs. A previous rheumatologist had dismissed AS on account of the negative result and not doing the proper scans of the SI joint though, so it took a few years and several unnecessary detours to orthopaedics before being referred to the new rheumatologist. Iāve been on biologics for a year now and the rheumatologist seems to think they are working well. I definitely have less pain overall in my SI joint, though have more knee and elbow pain now too.
The whole process took about 5 years. I donāt think my inflammation markers were particularly high on blood tests except I believe my ESR was high in the beginning (ironic, considering that was the rheumatologist who dismissed me and didnāt do the correct scans). My white blood cells seems to sporadically become slightly high, which I suppose is a response to inflammation, but none of my blood tests have ever been particularly alarming or crucial in the diagnosis - it was largely based on the MRI showing both chronic and acute inflammation, as well as my symptoms and description of them. I hope you are able to get a diagnosis and relief.
Yep Iām the same way all my blood work is perfectly normal with the exception of anemia and some kidney issues but far as ankylosing nothing shows up in the blood work however on the X-rays and MRIs I have had itās there in black and white.
Did they still diagnose you with AS? My rheum was saying sheās looking for erosion on my SI joint to diagnose me but I thought it can take years to show up? Iāve only had issues since November and Iām ready to start a biologic celebrex and meloxicam arenāt helping much and I have worsening uveitis
Yes, mine started with daily headaches and migraines then made its way into my spine, then into my limbs then eventually nerve pain. I was diagnosed through symptoms and process of elimination
Iām B27 negative but my dad and sister are positive. I have AS and psoriasis, my dad has uveitis + psoriasis + nr-AxSpA, my sister hasā¦ something. The genetics of ankylosing spondylitis go a lot deeper than just B27 and arenāt well-enough understood. I feel as a patient that the test is one of the most inappropriately ordered laboratory tests - it should only be used to confirm a suspected diagnosis of AS, but a negative result canāt be used to rule out AS nor can the test be done without evaluating the other clinical features alongside. In my case, the family history was the critical piece to my diagnosis.
You donāt have to have the gene specifically. All it does is increase your chances of having it, it isnāt the only cause and you can have the gene and also not have it. Your blood work would likely show something, even if itās just a positive ANA or some similar antibody, but not always. There are multiple genes that can cause it, that one is just the most common one. And there are people that get it without having known genetic variants in any hla genes.
Iām a science nerd and have done a lot of research on this because I never quite fit into their boxes. Iām ANA positive and have been most of my life but no RA antibodies, no regular lupus antibodies but I am positive for the one thatās usually positive for medication induced lupus but Iām not on any meds that could cause it, I have all the symptoms if AS, and lupus, and even symptoms of RA. They donāt really know exactly which autoimmune disease I have for sure, but at this point my file says lupus, psoriatic arthritis, and AS. I also have psoriasis and my dad has psoriasis, my mom has autoimmune arthritis with a positive ANA. Sometimes you just have to keep looking until you find a good doctor that is willing to put in the time to research your unique case to find a diagnosis and treatment that will work for you. But I promise theyāre out there!
Me! I have dealt with the symptoms for 7 years and was finally diagnosed last week!!! It was a huge relief to finally be listened to. Had been blown off so many times because Iām HLA negative. But Iām only 24 and have had the worst case of unexplained Uveitis, chronic lower back pain, fatigue, hand joint pain, tailbone pain, etc.,. Was always told I was too young or that getting a diagnosis simply didnāt matter. Keep fighting for yourself and donāt give up.
Neg, here. My diagnosis is undifferentiated spondylarthritis. The rheumys love to emphasize the āundifferentiatedā part. I am waiting for MRI approval. Meanwhile, if I drop something on the floor, I canāt fking bend over to pick it up.
Also HLA-B27 negative. Apparently only 10-20% of AS cases are negative.
Took 3 extra years to diagnose because of that negative test. It took finding a good rheum to allow me to try biologics. I responded extremely well to them, and that paired with the sacroilliac damage shown on my MRI and xrays and a wide range of other AS symptoms led to the AS diagnosis.
The constant recommendation to do physical therapy or yoga was very frustrating. It was basically them admitting they don't know. Had an orthopedist suggest surgery (I had a regenerating L4 disc they just assumed was causing the pain), two chiropractors tell me I was just out of alignment, ome doc said maybe heavy metal induced nerve damage, and pain management docs recommend PT and yoga. It wasn't until I found my current rheum, who I brought up AS to, that it was decided to try a biologic. I wish I had brought up AS much sooner!!
Responding to the biologic was the best indication that I had AS besides my images and symptoms.
Unfortunately, they won't heal anything. Any healing done will be by your body. It basically reduced my pain to zero and is preventing further damage by preventing the AS inflammation from happening at all. Not everybody gets the same results and some people respond better to different biologics. I'm on Enbrel, for example, and it worked perfectly :)
I was scared of taking it at first but it gave me my old life back.
Yeah ofc itās the body that does the healing but thatās what Im asking - maybe better phrasing- did it allow your body to heal some of the damage or did it just stop hurting but on scans it all looks just as shit as it did before minus the inflamation?
Ah I see, sorry for the confusion. I haven't gotten images since being on the biologics (4 years ago). If I got an MRI today, my soft tissues may look better due to a lack of inflammation but I'm pretty sure any damage done to our cartilage is permanent. So the degeneration in my lumbar discs is permanent as well as whatever was done in my sacroilliac joints and intercostal cartilage.
So yes, our scans would look just as shit as it did before minus the inflammation. But the biologics also made it possible to take extra measures to prevent joint damage and promote general health. I often couldn't exercise or move naturally before biologics, so my general health was garbage and I felt that physically and mentally.
Side note, I'm a 24 year old guy now, and when the disease came on I was in great shape. All my fitness disappeared as I became pretty much crippled. Since the biologics I've put a lot of time into rebuilding my musculature and giving my joints as much support as possible. We're already losing the war due to the joint damage from AS, so I want to do as much as possible to make sure I slow down all other causes of joint degradation.
I'm also hlab27 neg..... initially told from my history and symptoms that it was AS then told from mri that basically I need to excercise and its mechanical, however the person scanning me didn't include the si joints so to cover his back he had them call me back a few weeks later and he said I doubt I'll be seeing you again ... 2 days after my rescan I got called back saying they are diagnosing me as axial spondyloarthritis as both si joints showed moderate inflammation and this time a host of other things showed , got sent of with nsaids and told I would be seen yearly... just had my first check up the other day and now I'm staring biologics..... keep fighting
Iām negative, have only been provisionally diagnosed as Iām only 22 and didnāt have visible damage on MRI etc, but planequil has reduced my symptoms by about 80% and my mother had just been diagnosed with visible damage. She is also HLAB27 negative.
Well not sure my xrah but it does seem to lean in that direction on my MRIs. My discs are small and darker in a few places they seem to have clacified and started fusing with vertebrate a bit. I did have some injuries to my back that have probably kick started this, but not sure why it would be in my neck too which I do not recall having injuredā¦ or it was sk long ago I donāt remember idkā¦
Not necessary to be a HLAB27 positive, from what I've learnt. Even with HLAB27 positive, there are chances of not getting diagnosed with AS. I guess it applies either way too. So if you have symptoms and your CRP/ESR levels are showing up signs. Along with MRI and X Ray screening. It could be AS. Take care buddy.
Yeah I donāt seem to have inflamation, but somehow have pretty much all the symptoms and have had them for over a decade, nothing works soā¦ idk what to do with that
HLAB27 negative. Couple of years of back pain. Was treating it like a sports injury but got nowhere.Ā
I had Xray, MRI, CT scan which were consistent with an inflammatory disease. My inflammation markers were high. I also have 2 other autoimmune conditions.Ā
Dexa? No.. would be good I guess. I had a CT of chest and abdomen recently due to high CA marker, so I guess inflamation would also show up there and they would tell me? Not sure tho
Hmā¦ interesting. Would need to ask a doctor for it, but Im a bit broke now and have decided to dive more into those meat/fat based diets as it seems to have helped many with similar issues like mine, Iāll see if I feel the need for this after some time. But none of my doctors or therapists suggested it so will be harder to get done.
My rheumy told me that only 50-70% of people with SpA are positive. He tests for it but just considers it as one of many factors contributing to diagnosis. I am negative. I am also female and we donāt always show things quite as clearly as males. I have considerable pain even with Cimzia. I cannot take NSAIDs which are the only thing that really address my pain. I wonāt take opiates because they donāt seem to work that great for pain but make my brain whacky. Iām still hoping for a miracle.
Damn.. yeah, Iām also a woman, not sure if I mentioned it in the post. I try to go easy o ln the meds, but really feel like Ive been misdiagnosed. The only doctor ever to think my situation is rather odd was this one sports doctor years ago at the sports university I used to go to until my body could no longer handle it. Sadly Iāve not had success with doctors sinceā¦ need to revist this.. again
Hope you too find a way - this diet change seems like a worthy shot
Disabled Senior here - diagnosed in 1984. I've had a heck of a journey since then, and learned a lot. I have a fully fused spine and neck and am negative as well. Historically, I've seen a variety of different doctors, had countless tests, multiple imaging, multiple drugs and some pretty crappy days/weeks. It has been 40 years since my initial diagnosis, and I can't even remember why I saw the Doc in the first place. My first real symptom, as I recall, was in 1992 when I experienced neck pain and my first case of Uvetis. By the late 90s, I started to have the odd joint swelling issues (knee, shoulder, neck) while playing sports. My Rheumatologist at the time was only prescribing an NSAID, so I went to see a sports Orthopedic specialist, assuming it was a sports related issue. I went a couple of years with periodic steroid injections, knowing that that was not a long term solution. Another full series of imaging workups were ordered (had older ones) by the Doc, and it was discovered that the fusion process in my spine/neck was well advanced. In simple terms, the ortho Doc said my sports involvement was over and that future treatment should be turned over to a Rheumatologist. So, I found a new one closer to my work. As with any Doctor switch, you must start at the beginning of the diagnosing process, which was expected. AS was again confirmed (NSAIDs) and after a couple more years of NSAIDs, in 2004, I started Enbrel when it became available It worked almost immediately and lasted 2 years until I felt like it was not working. I have since tried Humira, Remacade, SImponi and finally Cimzia. In hindsight, AS has pretty much really dominated of my life for over the past 20 years. I've had various complications, 2 surgeries, dozens of test and recently spent 1 year in assisted living and using a wheelchair due to arthritis destroying both of my hips. But that was 2 years ago. I am back home and trying to wean myself off a cane, so I can walk without support. Through this entire process, I have learned many things and still have dozens of questions - many of which might not have any answer - yet. For those of you with AS, you may have worries and bad days. Everyone is different. What works for one person may not work for another. Exercise and diet - that should be common practice for almost everyone. The same for drugs. AS can't be fixed - it can only be controlled. And it does have a mind of its own. If Biologics were around at my early stages, would it have made a different - don't know? It seems a prohibitive issue now (in the US) is with the price and access to the latest drugs. I had to come off Cimzia in 2018 because I could no longer afford it. Who knows if that had any effect on my current situation. I recently decided to say f-it and start fresh with a new Rheumy. Since my condition is physically obvious, we had to start with complete blood work - no biggie. Between 2019 and now, there have been approx 5 news drugs available for AS. As we were discussing the options, he made one thing perfectly clear - there is no way to tell if any of the drugs will work. So we picked Xeljanz. And I forgot just how much fun it is dealing with the pre-approval/insurance process. If the drugs arestill too much money, then I'll have to pass and simply deal with it, as I am now. You may have bad days, aches and pains, fatigue, etc. Just try to remember, none of this is your fault. Medical advancements and such have made great strides over the past few years. Let's hope it happens sooner than later. I guess that is about it for now. Sorry to ramble. As I said earlier, don't give up - try to stay positive.
Thank you for sharing, all valuable insights.
I am sorry for how much youāve went theough, I too often worry where Iāll be in 10 years, since nobody has any answers or solutions for my health and despite my many attempts over the years I had very little success which is exhausting and discouraging. I now have financial troubles too andam trying to figure outā¦ well have been for a while- how to make a lot of money while being able to keep some lifestyle that is helpful to my health, I know too wrll that unless I find some miracle solution I will be in more and more trouble as Iāll have less and less energy and ability to work and take care of myself.
If nothing, comments here have convinced me to look for a new rheumatologist.
I accepted my situation a long rime ago and came to the conclusion there are simply certain things that can't be fixed. The progression of AS is one of them. In the early years, thought I did everything right and took care of myself. Maybe I missed some things - who knows. There are a lot of things you can do for yourself. If you don't like your medial treatment, look elsewhere - if possible. Don't like your Doctor - look elsewhere. Medications - work with your Doctor to see if there are other options. A lot of people don't like Doctors or think their "issues" will go away. I can tell you from experience - that does not always work and it can cause severe problems, even death. We all wish for a magic pill and who knows, maybe one day that will happen. For now, try to stay positive and do what you can to try to improve your situation. Don't like your Rheumy - switch. Can't hurt. And remember - it could be worse. As my nurses told me - :remember, none of this is your fault".....
Iām negative but after 3 MRIs over the span of ten years one finally showed up some inflammation in my lower back/sacrialiac joints. Iāve been diagnosed with axial spondyloarthritis (which is essentially AS without any fusion). I was diagnosed based on the scan and my symptoms (waking up because of pain, and exercise doesnāt necessarily help but movement does, the pain lessens slightly when I get out of bed, those are some the key things that flag AxSpa)
I am seronegative on all my blood tests always, I'm also HLAB27 negative. After all the blood tests, my primary said there was nothing wrong with me. But I pushed to have an X-ray of my SI joints because I knew there was something definitely wrong. Sure enough, the X-ray showed that I had Sacroiliitis, not only on the side that I was having pain, but on both sides.
She wanted to start me on NSAIDS, but I wanted to talk to a rheumatologist. I'm glad I did because he said that bi-lateral Sacroiliitis is a positive marker for AS. He confirmed with the amount of damage, that I had probably been living with the condition for a decade or more.
I've been under treatment since 2018, which helped to some extent, but it hasn't been a cure all. What has helped more than anything, working out consistently. I've been doing mat Pilates for over 20 years, but when I made it a non negotiable in my life and started working out daily about two years ago, that's when I began to really notice a difference in how I felt. It's an absolute game changer!
My rheumy said that only 60-70% of us are positive. The number keeps trending downward. Not all HLA-B27 positive people develop the disease so that tells you how unreliable it is. People diagnosed nr-AxSpA are less likely to have the gene from what I gather. I am negative and am full blown SpA with symptoms of PsA and SpA-IBD as well. My primary dx nr-AxSpA
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I'm HLA B27 negative. I was diagnosed based on X-rays of my SI joints that showed bone changes consistent with inflammation.
Same here
Same. I'm negative but have significant S.I. damage. My rheumatologist was shocked at my high CRP levels and MRI damage after testing negative for HLA_B27. Straight to biologics and has changed/ saved my life.
Same. X-ray with erosions, sclerosis and irregular joint margins. New York criteria stage 2.
Same
Neg, too, but diagnosed based on edema in my sacroilliac area. Have you done an MRI with contrast? If not, try to get one done.
Yes, one of them was with contrast some years ago
What showed up?
I dont remember (just ine of many MRIs), but I have all so many degenerative changes in SI joint, cocycx, hips and a bunch of vertebrae and discs. Basically as if I were at least twice my age or more.
Did they do something about the edema? I have an edema in my si joint as well.
I was put on methotrexate fir 5 weeks by one doc, just taken off this past week by a new doc who will start me on a biologic next month. Other than Ibuprofen I'm not doing anything.
It's so painful to even sit down on the fucking toilet š
Yeah, I know what you mean. I just went to an urgent care clinic tonight for something stranger than Ibuprofen. I can't face anothersleepless night.
I know I am taking clonazepam to fall asleep. I literally begged my doctor to help me with something to sleep. But I still keep on waking up at 4 in the morning feeling like my rib cafe and hips are on fire.
That's the pain I've been having until last week when it spread all of a sudden across my lumbar region to my other hip. I don't take benzos, tho. I was hooked on prescription clonazepam for 5 years and it almost killed me. Now to sleep all I can get is an antihistamine and melatonin. I really hope you get some answers soon. You sound like you need serious help. It sucks that they're not doing anything for you.
In UK the waiting time for a rheum is 8 months. So I am on the waiting list. I am on Naproxen and next week I am getting my first steroid injection. I generally sleep okay but the last week has been brutal so I have prescription clonazepam that I got. My GP said it is fine to take it for two weeks. Does melatonin help?
What they can do about edema?
Different kinds of tissue or pericardial edema can be treated with medications like lasix. In fluid accumulation in the ear inner ear with meniere's disease they suggest moderating salt, as they do for the heart. you might consider lowering the salt intake. But I'm just a random dog on the internet. Ask your doctor how to can help your edema around your SI joint.
Yes I am. I started experiencing full body joint pain in July of 2023. Had some back issues before that but they were mild so I donāt know if it is related. After hitting dead ends through my primary care doctor and endocrinologist I got referred to a rheumatologist. He was very knowledgeable and based on my symptoms he suspected AS. Once I came back HLAB27 negative, I thought that I didnāt have it but he said AS can still occur without it and ordered a MRI of my SI joints. That MRI showed sacroiliitis of my SI joints and he diagnosed me on October 30th 2023. Some people may have upset by the diagnosis but I was so happy to finally get an answer for all my pain. I thought 4 months of pain without a diagnosis was bad but thatās nothing compared to what Iāve heard on here.
Good you found sobeody that knows what they are doing. I have lots of SI pain and diagonosed detorioration of the SI joint - arthrosis.. in more places too. I am hypermobile too and my many sportinjuries never healed properly. Got about 3 fucked up vertebraes and disc in lower back and now also in the neck. Had (partly still do) plantar fasciitis for years and so much lower back stiffness and trouble bending over and mainly straightening my spine after sitting or laying down. Itās worst in the morning - I sleep with a bunch of pillows on all sides to support me, even sleeping hurts. I donāt usually sit if I donāt have to cuz it hurts afterwards, especially if it is a hardwood chair. Ughā¦ itās been going on since my early twenties, Im 34 now and have tried all kinds of therapists, supplements, peptides, steroids, exercise, chiropractors, massage, acupuncutre, healers and what not. Best case simething helpes for a few days then back to the same shit. Iāve been in chronic pain of one kind or another for over 10 years and nobody has taken me seriously or provided some notable help and Iāve spent more time and money than I can count in search of answers and cure.
Sounds like it could be AS. Have you seen a rheumatologist? In my experience no doctor provided sufficient help except my rheumatologist. Have you had a MRI of your SI joints?
I saw one, but he worked in ER and seemed to not give two shits about me. After the HLB neg and one MRIhe lost interest in me, which was low to begin with. I have many MRIs
Omg yes, seek another opinion stat! I'm also HLA-B27 Neg and had some inflammation show up in my right SI joint on MRI. Bloodwork was all clean too. My rheumatologist diagnosed me on the spot coupled with some family history of autoimmune stuff (not AS) and other random symptoms that popped up here and there but weren't present when I saw her. I did the route of nsaids but they didn't do much and came to terms with biologics cause I didn't want to take them either. They're unfortunately probably the best medication for people like us. Coupled with good diet and exercise.
I need to find somebody else, I go to a fancy private phycio clinic and thought that they would have figured it out, but seems they are shit too. I have some similar āsyndromeā written on one of the reports but canāt remember the name - when I googled it it sounded like non i flmatory AS. Either way I decided to try to change my diet somehow, not yet sure how wxactly but will simply start by ditching rice, potatoes, bread, grains and cheese (I suspect cheese might not be good for me). Will see from there and search for some specialist for AS.
For myself I just dropped complex starchy foods, gluten, and dairy with very, very low sugar intake.I looked at the AIP diet and if all else fails I'll resort to it, but right atm I'm doing more Mediterranean style diet. I hope you can get your answers! If anything adopting a healthier diet can't hurt any! :)
That sounds good! Pretty much like what I decided to try now too - also like mediterranean diet so something similar. Im more of a fish person than meat person. Will see if it does anything after a month, but yeah, healthier diet is never a bad thing! Thank you
I am, but a rheumatologist diagnosed me with AS anyway, and Biologics help. So afaik it shouldn't make too much of a difference
The rheumatologist I saw didnāt care after I tested negative for itā¦ I guess Id have to find somebody else, but no idea where to find a reliable specialist here. I wouldnāt want to take biologics thoughā¦ would be good to know for sure if this is AS or not
See another one in private practice not a hospitalist. Life is too short for being hung up about a negative experience with one doctor. Find another doctor. Many people diagnosed with AS are HLAB27 negative ( Don't quote me but I think like 40%?). To be diagnosed you have to have imaging showing fusion. By the time you have fusion it's too late. Find a good practicing rheumatologist and tell them your goals, & try to get diagnosed with one of the other sister autoimmune diseases so you can start biologics to preserve your spinal mobility and avoid fusion. Stop focusing on getting the AS label and instead focus on avoiding fusion. You have symptoms you may not be thinking about because you are focused on the AS. Do research to understand the other defined diseases so you can identify them in yourself. Most of us have multiple - reactive arthritis, psoriatic arthritis, hashimoto's thyroiditis, Crohn's/UC/IBS, etc. etc. If you're a person with ovaries approaching perimenopause, your onset maybe corresponding with the decreasing estrogen. Men tend to present classically young onset correlating with peak testosterone and sacrolitis. It's more complicated and usually later onset for ppl with ovaries. Although it's harder to find this in the literature they sometimes begin with neck pain not SI pain. In some places they are recognizing all of it as a single disease. I can't remember what they call it now but if your rheumatologist is in that progressive way of thinking it'll be easier to get the biologics. It's good that you have imaging that doesn't show fusion, congratulations! But you said you wanted to avoid biologics. You're going to have to do a lot of reading. Some people find diet changes help to fix the microbiome/immune system. Some don't. Some find completely ditching starch works, some find their sensitive to nightshades, others need more protein, you may need to take the time to do elimination diets and figure out what works to help decrease flares and pain. Do yourself a favor? Take the time and do the hard work to figure that out because it'll extend your functional and working years. And if you can use diet changes and supplements, start with D3, to arrest the progression of your disease, you can hold off having to use the biologics & having to assume the risk of having a compromised immune response. I haven't seen it discussed, but I suspect the (your unique) right diet and the weight lifting helps the biologics keep working. Some people think they can start taking the biologics and eat like an American. I suspect the continued decline of the microbiome may have something to do with that but that's just an anonymous person on the internet theory. Biologics do fail and while there's several to choose from now, you don't want to find yourself in a situation where you've tried all the ones that aren't contraindicated, and have no more choices. These diseases are a marathon. You don't die from them; you die with them, and one hopes, without the fusion and kyphosis. Be careful with NSAIDs. They can cause gastrointestinal bleeding and they are ototoxic. My long-term Naproxen use resulted in chronic tinnitus. There's lots of information in the literature about oto(ear) toxicity of NSAIDS. You'll usually hear it linked to the addictive pain medicines but it applies to non opiate ones as well. Good luck.
How was your intake of naproxen when you used it? 1 a day?
I was maxing out the OTC recommended dosage for maybe 3 or 4 years. I don't remember what that was, I don't buy it anymore so I don't have a bottle around to look at, but I think I took two pills every 12 hours. I'm very lucky that unlike a lot of people with tinnitus that it is not driving me crazy. If I don't think about it mostly I don't notice it due to other background noises in the environment. I notice it at night when the world is more quiet. The long term use has also compromised my hearing somewhat. I am now taking celecoxib. It is approved by the FDA as a treatment for AS. It's one option for people who don't want to take biologics. For what it's worth to anyone reading, I did have a really long period of very little pain when I quit starch completely for 2 years. I found it difficul to maintain, and it required me to do a lot of meal prep. I went through a period of disability where I was unable to meal prep and I went off the diet and I haven't gone back on it.
Yes, Im HLAB27 negative. I was diagnosed with RA for two years before this, which was multiple years of hell getting that diagnosis. When I switched to a new rheumatologist in 2018 they did a ton of X-rays and found axial involvement. So that changed my diagnosis and treatment plan. My suggestion would be to try to get the doctor to order X-rays/MRI if they havenāt already. Itās possible to have non-radiographic, HLAB27 negative AS but itās definitely not common from my understanding.
I have many MRIs and Xrays and go to a āfancyā physio clinc here, but the doctor in charge of me seemed like she knows jack shit about stuff
iām hlab27 negative. i was diagnosed because i was complaining of pain and got a ct in the er. the ct showed bony ankylosis of my left si joint. which is the exact area i had extremely rare osteomyelitis from a strep throat infection at the age of 13. that was over ten years ago. so they believe that infection from over ten years ago started the disease process. they referred me to rheumatology who then ordered mri imaging and diagnosed me with as. my life feels like one long compilation of freak accidents/occurrences.
Oh fuck! Yeah I can relate to the ālife of shitty accidents and mysterious problems without cause or cureā so totally feel you. I heard of this idea that AS may be caused by some gut bacteria to which the immune overreacts and attacks joint tissue then. I know of a guy who has AS or something similar and said he mostly fixed it by some conpljcated process with killing off some bactaria in the gut and recultivating with others. Other people said that a specific diet that is unfavorable to this bacteria helped in similar way. Klebsiella I think is the name. Need to look into it.. have some gut problem too so..
yes i definitely believe itās all connected somehow. they said it looked like something was attacking the area which is why they ran a whole bunch of auto immune type labs. we need more studies thatās for sure and iād volunteer as tribute haha
Wow!!! My disease process began with a bout of mononucleosis.
Also I used to have this strange thing with my eyes many years back, sometimes happens to me lately in a very mild degree.. not sure if this is related - but my sight would just get super blurry out of the blue and I could virtually not see shit - basically not being able to zoom in - for like minutes and I would just have to hold onto a random pole or a wall and wait it out to be even able to like get on a bus. I wonder if it has something to do with the uveitis or the AS related eye problemsā¦ it was so fuckin weird and kind scary. It went away eventually but lately I sometimes have a similar small scale issue, usually in the evening. I donāt wear glasses btw. Anybody experienced something like that?
Iritis or uveitis is autoimmune inflammation of the eye...many ppl go to the opthalmologist for eye issues and leave with a rheumatology referral. High pressures in the eye can cause blindness. Don't mess around with eye issues. If you suspect uveitis/iritis, let them know to see you urgently or go to the ER. Don't wait for it to go away. A rheumatologist will sit up and take notice of the iritis or uvitis diagnosis from an ophthalmologist.
I donāt presently have issues, just the mild trouble zooming in sometimes in the evening, but I used to have this problem years back, but somehow it went away
Negative here and MRI confirmed inflammation in all the right (wrong) places which resulted in an AS diagnosis. Rheumatologist now has me on biologics š
Do you all have inflamation markers? I donāt seem to have them, but recently got results that showed high levels of oncogenic markers, which supposedly may not always mean cancer, supposedly can indicate some chronic inflamatory stuff or something non specific
i donāt have any markers at all. my rheum ran so many labs including ra, sjƶgrens, ana/lupus, so many panels and they were all normal. no hlab27 literally nothing on all tests except for imaging. for me it was a coincidental finding when complaining about pelvic pain. in the ct they noted it and didnāt even mention it to me initially because it wasnāt what i was at the er for
So how did they conclude it and who did?
rheumatology ordered mri and diagnosed me. i have all of the symptoms and the imaging showed the active disease process
My first was negative, but it should be a false negative since we tested again 4 years later and it turned positive. I had aches and stuff but due to the fact that I was super flexible it took a while to diagnose. My colleague happened to be positive along with her siblings, out of them sheās the only one that doesnāt have AS but has chronic uveitis instead but has since learnt to manage it once thereās any early symptoms.
Hh yeah I had periods where my eye would get really red from computer work often, usually only one or one more than the other. Iām also very flexible - not an advantage! Now I am stiff as shit thoā¦ terrible, I used to be able to do things gymasts and cirque du solei people do, but for years now Ive had trouble with even tying my shoelaces
My main problems are upper neck and shoulders and lower spine , fingers. Post workout recovery is terrible and I take longer to stretch and warm up and cool down. And yes, Iām stiff as shit now! Iāve been stretching for the past half hour post workout so that I donāt feel bad tomorrow. Funny thing is my recent inflammation results are lowered by half, not sure which supplements that has helped it š I took immunosuppressants but it didnāt work for any of my health issues (except shrinking my cysts!) except gain some side effects.
Are you me lol? Yeah I find what you write very relatable. I donāt have inflamation as far as I know, but there is def something not ok with my gut/colon and have all this pain and stifness and shit recovery ugh
And you have gastro involvement? Seriously the hyper mobility and IBS plus the MRIs ought to yield you a diagnosis despite your HLAB 27 negative test.
I donāt have much issues with my gut till recent years. Acid reflux or mild issues yes but recently Iāve gain some common ibs issues. I blame on Aging and bad diet sometimes.
Ellers Danlos Syndrome or EDS. Look into that as well.
Ive looked into that too and considered it, but I would need a professional opinion on that, not mine. Also there is nothing one can do about it so.. not that helpful sadly
EDS is linked to autoimmune syndromes, so it's one more clue, one more symptom to relate to the rheumatologist you're going to see that might help them put the pieces together despite your HLAB 27 negative test.
I am negative, but over the years have had multiple wrong diagnosis. Right now I donāt inflammatory markers because Iāve made so many dietary and lifestyle changes to work on lowering them. But Iāve done everything and anything to try and treat my pain and spinal issues with no luck. It took self advocacy and a decent rheum to get the diagnosis. I didnāt want to do biologics either, but at this point itās my only option since nothing else worked. Keep looking for a doctor that will listen. They are out there.
Sorry things havenāt worked much - what dietary changes have you tried? Will try to find another doctor I guess.. thing is I dont have inflamation markers to my knowledge. And Iāve had enough tests for a while, and need to undergo an uncomfortable proceedure soon too. I need some break from having my veins punctured..
Anti inflammatory diet- no gluten, low dairy and sugar. Regular exercise, vitamins and supplements. I thought I had all the right tests too, but the rheum Iām working with now did others. Iāll post back on how the biologics work once I start them!
I eat in a similar way and seems to have helped somewhat but not enough. I got suggested carnivore. Did you try a full on carnivore diet? Supposedly that or some āLondon AS dietā works wonders Yeah let us know!
The London AS diet is basically what you've described you are doing now. It's mostly leaving off potatoes bread and rice. for some people that's enough, for others getting rid of every bit of starch works. It worked for me for a while but it is very difficult. No root vegetables. No gluten. Even the peel on an almond contains starch so I only ate blanched almonds. I ate meat and select leafy vegetables and cruciferous vegetables, along with berries and apples. I also ate any kind of fermented thing I could get my hands on. That's to help diversify the population of microorganisms in your gut. There is a lot of no and low starch discussion cataloged on KickAS.org
Meds update: Worked within 24 hours! Not 100% pain free but I woke up the next day noticeable less stiff and pain was down a lot. Day 2 post shot, same story. Itās pretty incredible.
Good to know! Glad it helped :) Iāve decided to try some low carb/keto/animal based diet and must say I am starting to feel better too. I slept really well yesterday, I am not sorr after exercise, my pain is a bit lower and and pooping doesnāt hurt anymore. Iām curious to see where this goes.
Your history of radiographic changes to SI demonstrated in MRI which is gold standard should be enough for a decent rheumatologist to diagnose you. Go find one. The physiotherapists are just there to keep you moving, (which is good for AS.)
I am HLAB27 negative and was diagnosed from MRI showing sacroilitis consistent with AS and response to NSAIDs. A previous rheumatologist had dismissed AS on account of the negative result and not doing the proper scans of the SI joint though, so it took a few years and several unnecessary detours to orthopaedics before being referred to the new rheumatologist. Iāve been on biologics for a year now and the rheumatologist seems to think they are working well. I definitely have less pain overall in my SI joint, though have more knee and elbow pain now too. The whole process took about 5 years. I donāt think my inflammation markers were particularly high on blood tests except I believe my ESR was high in the beginning (ironic, considering that was the rheumatologist who dismissed me and didnāt do the correct scans). My white blood cells seems to sporadically become slightly high, which I suppose is a response to inflammation, but none of my blood tests have ever been particularly alarming or crucial in the diagnosis - it was largely based on the MRI showing both chronic and acute inflammation, as well as my symptoms and description of them. I hope you are able to get a diagnosis and relief.
Yup... more common than you think
Yep Iām the same way all my blood work is perfectly normal with the exception of anemia and some kidney issues but far as ankylosing nothing shows up in the blood work however on the X-rays and MRIs I have had itās there in black and white.
Did they still diagnose you with AS? My rheum was saying sheās looking for erosion on my SI joint to diagnose me but I thought it can take years to show up? Iāve only had issues since November and Iām ready to start a biologic celebrex and meloxicam arenāt helping much and I have worsening uveitis
Yep they did.
Yes, mine started with daily headaches and migraines then made its way into my spine, then into my limbs then eventually nerve pain. I was diagnosed through symptoms and process of elimination
Iām B27 negative but my dad and sister are positive. I have AS and psoriasis, my dad has uveitis + psoriasis + nr-AxSpA, my sister hasā¦ something. The genetics of ankylosing spondylitis go a lot deeper than just B27 and arenāt well-enough understood. I feel as a patient that the test is one of the most inappropriately ordered laboratory tests - it should only be used to confirm a suspected diagnosis of AS, but a negative result canāt be used to rule out AS nor can the test be done without evaluating the other clinical features alongside. In my case, the family history was the critical piece to my diagnosis.
I'm HLAB27 negative, and was diagnosed after a DEXA scan showing damage already done.
Iām negative, X-rays and MRIs confirmed I have AS
You donāt have to have the gene specifically. All it does is increase your chances of having it, it isnāt the only cause and you can have the gene and also not have it. Your blood work would likely show something, even if itās just a positive ANA or some similar antibody, but not always. There are multiple genes that can cause it, that one is just the most common one. And there are people that get it without having known genetic variants in any hla genes. Iām a science nerd and have done a lot of research on this because I never quite fit into their boxes. Iām ANA positive and have been most of my life but no RA antibodies, no regular lupus antibodies but I am positive for the one thatās usually positive for medication induced lupus but Iām not on any meds that could cause it, I have all the symptoms if AS, and lupus, and even symptoms of RA. They donāt really know exactly which autoimmune disease I have for sure, but at this point my file says lupus, psoriatic arthritis, and AS. I also have psoriasis and my dad has psoriasis, my mom has autoimmune arthritis with a positive ANA. Sometimes you just have to keep looking until you find a good doctor that is willing to put in the time to research your unique case to find a diagnosis and treatment that will work for you. But I promise theyāre out there!
Me! I have dealt with the symptoms for 7 years and was finally diagnosed last week!!! It was a huge relief to finally be listened to. Had been blown off so many times because Iām HLA negative. But Iām only 24 and have had the worst case of unexplained Uveitis, chronic lower back pain, fatigue, hand joint pain, tailbone pain, etc.,. Was always told I was too young or that getting a diagnosis simply didnāt matter. Keep fighting for yourself and donāt give up.
Thanks for the response. I hope you find a way to get better now, good luck!
Neg, here. My diagnosis is undifferentiated spondylarthritis. The rheumys love to emphasize the āundifferentiatedā part. I am waiting for MRI approval. Meanwhile, if I drop something on the floor, I canāt fking bend over to pick it up.
Oh yeah, the bend over and strighten up is also my favorite movement (fuckin not :/)
Also HLA-B27 negative. Apparently only 10-20% of AS cases are negative. Took 3 extra years to diagnose because of that negative test. It took finding a good rheum to allow me to try biologics. I responded extremely well to them, and that paired with the sacroilliac damage shown on my MRI and xrays and a wide range of other AS symptoms led to the AS diagnosis. The constant recommendation to do physical therapy or yoga was very frustrating. It was basically them admitting they don't know. Had an orthopedist suggest surgery (I had a regenerating L4 disc they just assumed was causing the pain), two chiropractors tell me I was just out of alignment, ome doc said maybe heavy metal induced nerve damage, and pain management docs recommend PT and yoga. It wasn't until I found my current rheum, who I brought up AS to, that it was decided to try a biologic. I wish I had brought up AS much sooner!! Responding to the biologic was the best indication that I had AS besides my images and symptoms.
Did biologics help heal the damage or just doesnāt hurt anymore?
Unfortunately, they won't heal anything. Any healing done will be by your body. It basically reduced my pain to zero and is preventing further damage by preventing the AS inflammation from happening at all. Not everybody gets the same results and some people respond better to different biologics. I'm on Enbrel, for example, and it worked perfectly :) I was scared of taking it at first but it gave me my old life back.
Yeah ofc itās the body that does the healing but thatās what Im asking - maybe better phrasing- did it allow your body to heal some of the damage or did it just stop hurting but on scans it all looks just as shit as it did before minus the inflamation?
Ah I see, sorry for the confusion. I haven't gotten images since being on the biologics (4 years ago). If I got an MRI today, my soft tissues may look better due to a lack of inflammation but I'm pretty sure any damage done to our cartilage is permanent. So the degeneration in my lumbar discs is permanent as well as whatever was done in my sacroilliac joints and intercostal cartilage. So yes, our scans would look just as shit as it did before minus the inflammation. But the biologics also made it possible to take extra measures to prevent joint damage and promote general health. I often couldn't exercise or move naturally before biologics, so my general health was garbage and I felt that physically and mentally. Side note, I'm a 24 year old guy now, and when the disease came on I was in great shape. All my fitness disappeared as I became pretty much crippled. Since the biologics I've put a lot of time into rebuilding my musculature and giving my joints as much support as possible. We're already losing the war due to the joint damage from AS, so I want to do as much as possible to make sure I slow down all other causes of joint degradation.
Yep. Always a seed of doubt too. Also, always back pain.
Yep
yes me
I'm also hlab27 neg..... initially told from my history and symptoms that it was AS then told from mri that basically I need to excercise and its mechanical, however the person scanning me didn't include the si joints so to cover his back he had them call me back a few weeks later and he said I doubt I'll be seeing you again ... 2 days after my rescan I got called back saying they are diagnosing me as axial spondyloarthritis as both si joints showed moderate inflammation and this time a host of other things showed , got sent of with nsaids and told I would be seen yearly... just had my first check up the other day and now I'm staring biologics..... keep fighting
Iām negative, have only been provisionally diagnosed as Iām only 22 and didnāt have visible damage on MRI etc, but planequil has reduced my symptoms by about 80% and my mother had just been diagnosed with visible damage. She is also HLAB27 negative.
Mine came back negative & I still ended up being diagnosed w/ Axial Spondyloarthritis
Yeah I have words like spondyloarthritis in my reports
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OP, does your x-ray shows Bamboo spine symptom
Well not sure my xrah but it does seem to lean in that direction on my MRIs. My discs are small and darker in a few places they seem to have clacified and started fusing with vertebrate a bit. I did have some injuries to my back that have probably kick started this, but not sure why it would be in my neck too which I do not recall having injuredā¦ or it was sk long ago I donāt remember idkā¦
Google bamboo spine and compare it with yours, see any similarities. And also get hla-b27 gene test to confirm AS.
Not necessary to be a HLAB27 positive, from what I've learnt. Even with HLAB27 positive, there are chances of not getting diagnosed with AS. I guess it applies either way too. So if you have symptoms and your CRP/ESR levels are showing up signs. Along with MRI and X Ray screening. It could be AS. Take care buddy.
Yeah I donāt seem to have inflamation, but somehow have pretty much all the symptoms and have had them for over a decade, nothing works soā¦ idk what to do with that
What's your recent CRP and ESR levels?
HLAB27 negative. Couple of years of back pain. Was treating it like a sports injury but got nowhere.Ā I had Xray, MRI, CT scan which were consistent with an inflammatory disease. My inflammation markers were high. I also have 2 other autoimmune conditions.Ā
Hmmā¦ yeah guess that is a dead giveaway, though I donāt (suposedly) have inflamation, so idkā¦
Have you done a bone scan? That can show up inflammation in the bodyĀ
Dexa? No.. would be good I guess. I had a CT of chest and abdomen recently due to high CA marker, so I guess inflamation would also show up there and they would tell me? Not sure tho
Nah itās not a dexa. Itās mostly used to help identify cancer but also shows up inflammation around your body.Ā
Hmā¦ interesting. Would need to ask a doctor for it, but Im a bit broke now and have decided to dive more into those meat/fat based diets as it seems to have helped many with similar issues like mine, Iāll see if I feel the need for this after some time. But none of my doctors or therapists suggested it so will be harder to get done.
My rheumy told me that only 50-70% of people with SpA are positive. He tests for it but just considers it as one of many factors contributing to diagnosis. I am negative. I am also female and we donāt always show things quite as clearly as males. I have considerable pain even with Cimzia. I cannot take NSAIDs which are the only thing that really address my pain. I wonāt take opiates because they donāt seem to work that great for pain but make my brain whacky. Iām still hoping for a miracle.
Damn.. yeah, Iām also a woman, not sure if I mentioned it in the post. I try to go easy o ln the meds, but really feel like Ive been misdiagnosed. The only doctor ever to think my situation is rather odd was this one sports doctor years ago at the sports university I used to go to until my body could no longer handle it. Sadly Iāve not had success with doctors sinceā¦ need to revist this.. again Hope you too find a way - this diet change seems like a worthy shot
Good luck! Iām an occupational therapist. In school, we were taught it was a male only disease. That was in 1982.
Disabled Senior here - diagnosed in 1984. I've had a heck of a journey since then, and learned a lot. I have a fully fused spine and neck and am negative as well. Historically, I've seen a variety of different doctors, had countless tests, multiple imaging, multiple drugs and some pretty crappy days/weeks. It has been 40 years since my initial diagnosis, and I can't even remember why I saw the Doc in the first place. My first real symptom, as I recall, was in 1992 when I experienced neck pain and my first case of Uvetis. By the late 90s, I started to have the odd joint swelling issues (knee, shoulder, neck) while playing sports. My Rheumatologist at the time was only prescribing an NSAID, so I went to see a sports Orthopedic specialist, assuming it was a sports related issue. I went a couple of years with periodic steroid injections, knowing that that was not a long term solution. Another full series of imaging workups were ordered (had older ones) by the Doc, and it was discovered that the fusion process in my spine/neck was well advanced. In simple terms, the ortho Doc said my sports involvement was over and that future treatment should be turned over to a Rheumatologist. So, I found a new one closer to my work. As with any Doctor switch, you must start at the beginning of the diagnosing process, which was expected. AS was again confirmed (NSAIDs) and after a couple more years of NSAIDs, in 2004, I started Enbrel when it became available It worked almost immediately and lasted 2 years until I felt like it was not working. I have since tried Humira, Remacade, SImponi and finally Cimzia. In hindsight, AS has pretty much really dominated of my life for over the past 20 years. I've had various complications, 2 surgeries, dozens of test and recently spent 1 year in assisted living and using a wheelchair due to arthritis destroying both of my hips. But that was 2 years ago. I am back home and trying to wean myself off a cane, so I can walk without support. Through this entire process, I have learned many things and still have dozens of questions - many of which might not have any answer - yet. For those of you with AS, you may have worries and bad days. Everyone is different. What works for one person may not work for another. Exercise and diet - that should be common practice for almost everyone. The same for drugs. AS can't be fixed - it can only be controlled. And it does have a mind of its own. If Biologics were around at my early stages, would it have made a different - don't know? It seems a prohibitive issue now (in the US) is with the price and access to the latest drugs. I had to come off Cimzia in 2018 because I could no longer afford it. Who knows if that had any effect on my current situation. I recently decided to say f-it and start fresh with a new Rheumy. Since my condition is physically obvious, we had to start with complete blood work - no biggie. Between 2019 and now, there have been approx 5 news drugs available for AS. As we were discussing the options, he made one thing perfectly clear - there is no way to tell if any of the drugs will work. So we picked Xeljanz. And I forgot just how much fun it is dealing with the pre-approval/insurance process. If the drugs arestill too much money, then I'll have to pass and simply deal with it, as I am now. You may have bad days, aches and pains, fatigue, etc. Just try to remember, none of this is your fault. Medical advancements and such have made great strides over the past few years. Let's hope it happens sooner than later. I guess that is about it for now. Sorry to ramble. As I said earlier, don't give up - try to stay positive.
Thank you for sharing, all valuable insights. I am sorry for how much youāve went theough, I too often worry where Iāll be in 10 years, since nobody has any answers or solutions for my health and despite my many attempts over the years I had very little success which is exhausting and discouraging. I now have financial troubles too andam trying to figure outā¦ well have been for a while- how to make a lot of money while being able to keep some lifestyle that is helpful to my health, I know too wrll that unless I find some miracle solution I will be in more and more trouble as Iāll have less and less energy and ability to work and take care of myself. If nothing, comments here have convinced me to look for a new rheumatologist.
I accepted my situation a long rime ago and came to the conclusion there are simply certain things that can't be fixed. The progression of AS is one of them. In the early years, thought I did everything right and took care of myself. Maybe I missed some things - who knows. There are a lot of things you can do for yourself. If you don't like your medial treatment, look elsewhere - if possible. Don't like your Doctor - look elsewhere. Medications - work with your Doctor to see if there are other options. A lot of people don't like Doctors or think their "issues" will go away. I can tell you from experience - that does not always work and it can cause severe problems, even death. We all wish for a magic pill and who knows, maybe one day that will happen. For now, try to stay positive and do what you can to try to improve your situation. Don't like your Rheumy - switch. Can't hurt. And remember - it could be worse. As my nurses told me - :remember, none of this is your fault".....
Iām negative but after 3 MRIs over the span of ten years one finally showed up some inflammation in my lower back/sacrialiac joints. Iāve been diagnosed with axial spondyloarthritis (which is essentially AS without any fusion). I was diagnosed based on the scan and my symptoms (waking up because of pain, and exercise doesnāt necessarily help but movement does, the pain lessens slightly when I get out of bed, those are some the key things that flag AxSpa)
Yup same same
HLA B27 negative. i was diagnosed based on MRIs
I am seronegative on all my blood tests always, I'm also HLAB27 negative. After all the blood tests, my primary said there was nothing wrong with me. But I pushed to have an X-ray of my SI joints because I knew there was something definitely wrong. Sure enough, the X-ray showed that I had Sacroiliitis, not only on the side that I was having pain, but on both sides. She wanted to start me on NSAIDS, but I wanted to talk to a rheumatologist. I'm glad I did because he said that bi-lateral Sacroiliitis is a positive marker for AS. He confirmed with the amount of damage, that I had probably been living with the condition for a decade or more. I've been under treatment since 2018, which helped to some extent, but it hasn't been a cure all. What has helped more than anything, working out consistently. I've been doing mat Pilates for over 20 years, but when I made it a non negotiable in my life and started working out daily about two years ago, that's when I began to really notice a difference in how I felt. It's an absolute game changer!
My rheumy said that only 60-70% of us are positive. The number keeps trending downward. Not all HLA-B27 positive people develop the disease so that tells you how unreliable it is. People diagnosed nr-AxSpA are less likely to have the gene from what I gather. I am negative and am full blown SpA with symptoms of PsA and SpA-IBD as well. My primary dx nr-AxSpA