I started Cosentyx in September. This is my fourth biologic, not one did anything for my relentless SI pain. Since I started I've had an ear infection, followed by strep throat infection. And a yeast infection. Now I have an ear infection in the other ear. I was feeling like finally I'm on a med that was helping my joint pain even my SI joints. But do these infections mean I have to stop Cosentyx? This shit sucks and I want off this ride.

Anyone else dealing with this?

Hi everyone, the past few months I have been feeling soooo crap, my back is in pain every single day!! It gets so bad whenever I’m sat still somewhere for a longer time, I’ve had a mri and blood panel but nothing.. this pain is real and not normal:( all my other joints get so stiff aswell, my jaw is extremely bad, my hands and toes swell in the morning, my knees get super stiff and I’ve realised it gets so bad after alcohol, I don’t know what it is but I just want this pain to go away it’s ruining me. Please someone help

Hi I'm a 20 year old female. I am diagnosed with POTS syndrome in case that is relevant. I am in the process of possibly being diagnosed with Ankylosing Spondylitis. I have gotten imaging that shows facet degenerative changes in my lumbar spine as well as inflammation and deterioration of my right sacroiliac joint. I also have a disc herniation in left neural foramina at L5-S1 causing left-sided neural foramina narrowing.

I have been experiencing intense lower back and hip pain for months now. I also have been incredibly exhausted as well. It feels like my body is shutting down. The pain is always worse at night and in the morning. I expirence intense morning stiffness. My thumbnails have vertical ridges, I'm not sure if it's related but I know some people with Ankylosing Spondylitis have them. Overall I have just been very unwell. Tonight out of nowhere I expirenced the worse pain I've ever felt in my life. It was genuinely a 10/10 pain. It was the horrible stabbing pain in my lower left pelvis that radiated down my left thigh. I was screaming into my pillow, clenching my fists. It lasted for about 30 minutes at that intensity. I was so scared it wasn't going to stop. I have a couple questions. 1. does this all seem like Ankylosing Spondylitis? 2. Should I be worried about this new pain, could it be something serious?

I get a burning sensation in my toes from time to time but I can’t pin down exactly when or why this happens. Anyone else?

I recently stumbled upon the term "enthesitis", and it seems to track very well with what I experience throughout my body. Lat, pec, tricep, bicep, quad, now achilles, basically every tendon I have had some kind of pain and tendinitis with, and it's always at the insertion point of the tendon. It's generally caused by weightlifting or running etc., but I'm not really overdoing anything and I see other people my age doing way more stupid stuff than me without these issues, so makes me think something is wrong. Also, once it develops it doesn't really go away, and if I rest it just gets worse quickly, it's like my repair response is muted.

I'm a male and 22. This has been going on since I was maybe 15 or so. I also had some gut issues (painful bloating) as a younger kid, that went away for maybe 10 years, and then over the last few years have some gut isssues again, perhaps a mild case of IBS or maybe some kind of gut dysbiosis.

Around age 15, it felt like something changed qualitatively about my muscular contractions. I could no longer get any pump from exercising, and it's hard to describe but it's like it was impossible to really work the muscle, just the tendon got sore before the muscle did. Since I was 15, I have literally never experienced the limiting factor be my muscles, it's always managing some kind of tendon pain that's my limiting factor, and I'm never able to get much above a beginner strength level.

At age 17 I tore my hip labrum just standing up from a chair and got gluteal tendonitis and I was unable to walk without an aggressive limp for a few years due to that, with a lot of therapy I was able to rehab it a lot, pretty much the only thing I've ever been able to rehab successfully.

I also have spots of altered signal intensity in bone marrow (either fatty marrow or edema) in my sacrum, which apparently happens with AS as well. However, I have had several spine MRIs and xrays and hip MRIs and hip CTs, the spine stuff because I have a severe case of your run of the mill adolescent scoliosis, and the hip stuff because I tore my labrum at age 17. All the scans showed no arthritis, just some mild disc bulging/degeneration in my neck. So that would be one datapoint against AS I guess?

I'm seeing a rheumatologist but the earliest appointment is 3 months away. I suspect whatever I have is some kind of autoimmune thing but if it's not AS because I don't have arthritis, what could it be?

Another datapoint in favor of autoimmune cause of my enthesitis, is that I've had times in the past few years where my fundamental tendon recovery ability increases and I am able to build strength again, and then times where it goes down and I have to stop exercising. If it was some kind of genetic thing, I'd always have the same or worse amount of fundamental recovery ability, right? It wouldn't fluctuate so much.

I also had one of the earliest cases of Kawasaki disease as a newborn, have maintenance insomnia for no known reason, and severe scoliosis, and had anorexia from ages 9-19. Note that during my anorexia, my joint pain was at its worst; recovering anorexia helped it somewhat. But it really only increased my capacity by a certain amount; I went from struggling with daily tasks due to pain, to struggling with moderate exercise due to pain. My tendon capacity was barely enough to handle daily tasks during anorexia, my fingers were always infected, my immune system was shit and I was sick every week during the winter. But I also didn't have some of the other symptoms people with anorexia have, like fainting or anything. I did stop getting finger infections when I recovered, but my immune system was still not very good.

But lately, when I gave in to the suggestions of my family to try resting from exercise, I'm back to struggling with daily tasks despite not being underweight anymore, and exercising less it feels like my immune system is shit again, I'm getting sick all the time now, like every week. It feels like I have some kind of joint problem that anorexia accelerated the onset of, and that reversing anorexia I was able to regress the condition to where it would have been without the anorexia, but now it's naturally progressed again? And that daily exercising despite in pain, was like how a shark needs to swim to stay afloat, and when I stop everything rapidly weakens which doesn't make sense with what I see in healthy people.

My family's explanation for my pain is from scoliosis, anorexia and stunted bone growth leading to small tendons that get overloaded/too small for my body size, and growth stunting from my mother eating very little, not taking any folate or other prenatal vitamins, and feeling very sick during her pregnancy with me, she also had chronic liver disease when pregnant with me. But I don't know if those are things that cause a tendency to enthesitis later in life, you know?

I go on anorexia recovery forums and there is no mention of tendinitis or anything like that in recovered people. It's not scoliosis because my lower body tendons are just as affected, plus other people with scoliosis do not report the same kind of pain as me which is 100% at tendon insertions. Maybe mechanical enthesitis or even autoimmune enthesitis is an underreported thing that does in fact result from long-term anorexia and psychological stress? I don't know.

I'm around 15th percentile height/overall body size for men, but my wrist/ankle circumference are all ~1st percentile for women, so my family argues perhaps my peripheral tendons are too small to support my body at a healthy weight for my 15th-percentile-man overall body size? Like perhaps just doing daily things and moderate exercise with my body is already equivalent to a elite athlete level for someone whose overall percentile body size matches my percentile tendon size? But it doesn't make sense because I see some very strong little people who much have smaller bone diameters than I do. It doesn't make sense to have systemic tendon problems just because I'm small, right?

I would greatly appreciate any thoughts on if this is AS, or if it's not what it does sound like. Sorry for the super long post. Also, I'd greatly appreciate if anyone has recommendations for rheumatologists in the Philly, South Jersey, area. Willing to go to NYC as well. Thank you.

I know that’s weird but is anyone experiencing pain above their belly button? I’ve been getting pain in my ribs, neck and throat but that’s just a weird and random spot. Also the pain seems to be when clothing or anything touches or rubs against me. Just curious if anyone out there knows what’s going on lol

I was recently diagnosed with what is likely AS (hla b27 +, symptoms, family history, mri pending).

The only symptom that I don’t have is the morning stiffness. I don’t sleep in one position due to severe pain, especially at night, in my SI joints on both sides and coccyx area. I am complete not able to sleep on my back. So, I move right, left, stomach and so on all night long. I’m fully aware of it as I keep waking up due to pain.

So, my theory, could my lack of morning stiffness be because of the way I sleep? Theoretically, the stiffness appears due to prolong laying in one position.

Does anyone else have a similar experience in regard to stiffness?

Hi guys just wondering do you have damage on both SI joints or only one?

Diagnosed with AS 3 years ago. Been on and off on medications (mostly due to my disinterest towards having oral medicines on everyday basis). Got diagnosed with Uveities a couple of weeks before because of complication.

Loss of libido over the last couple of weeks since restarting the AS Medication and Uveities medication. Is this normal or am I reading too much into it ? Pls suggest. What to do improve this scenario?

I have been having increased brain fog and dizziness

Have even fainted a few times when doing my exercises.

Has anyone have experience with this ? And know any good ways to make the dizziness and brain fog go away ?

This disease is currently kicking my ass I use to be a fit and active guy now I can't even do stretches without getting light headed. Not tired at all.

Ps: I haven't started my bio meds yet as I'm still getting signed up for trial biologics

So some context. I am a Marine veteran from the mid 90s. I did not learn I had Ankylosing Spondylitis (AS) until 2021. I had just assumed I was fat and out of shape l. Which sadly is also true lol.

After the accidental discovery of my AS. (I got hurt at work and an xray discovered along with a giant kidney stone I didnt know was there.) I was put on Humira and Meloxicam. I got my life back for the first time in a decade I went for a jog. I was my old self no pain in the morning tons of energy again. Normal.

Then the Veterans Administration decided after 6 months of normalcy that they would switch me to something called Hadlima. It is a "bio similar' generic and half as effective. I was taking Humira every 10 days and the effects never lessened. Whereas the Hadlima the efficacy was 20% at day 10 and this is being generous.

My Dr. Is amazing I dont want to say there name because they are with the VA and I dont want any backlash to fall on them. ( I am also being intentionally vaugue about my Drs gender to hide the identity) We discussed changing to Enbrel as the appeals process in the VA is lengthy. My Dr. has worked at 2 different VA facilities and was visibly mad about how the pharmacy was "flat out refusing" to give Humira back to me.

Sadly Enbrel is completely ineffective. So we are trying a now 4th TNF inhibitor Certolizumab and im hopeful. My Dr is building a case to get me back on the Humira hence all the medication changes.

I have learned the decision to switch the medication from Humira to Hadlima was purely financial. So a person somewhere in that blob of an organization decided my medication was to expensive and I needed to have a less expensive less effective alternative.

I am wondering if anyone out here in the Redditverse has any ideas or advice on how to deal with the beurocrats at the VA? Or if there is any way to get Humira back through other means?

Thank you for your time. Thank you for reading this.

Can enthesitis happen in the lumbar spine? And back spasms? Can it entrap nerves and cause nerve pain in legs/feet?? I’m wondering if this is even possible.

So, I'm a 24F who was diagnosed in 2020 with AS. They suspect I've had it since I was 12, as the level of damage in my hips, lower spine, and hips was rather advanced. I will be getting my jaw joints replaced in the next few years- they're delaying considering my age and how often joint replacements need to be, well, replaced. Naturally, they placed me on immunosuppressants and gabapentin for associated nerve pain.

With that history in mind, I work as a veterinary assistant. I used to work full time, but it became very taxing on my body, and I had to reduce hours to part-time. The issue comes in that I get sick rather often due to a compromised immune system. It makes me anxious about getting in trouble with work, though I did disclose my condition before I was hired [personal choice, not forced by anyone.] I, of course, have a paper trail of doctor's notes.

This whole rambling post aside... How do you all navigate working with this disease?

Hello Just wanted to write on here that I finally have recieved a diagnosis of anklyosing spondylitis after 10 years of being told I had sciatica and/or water infections over and over again. Bittersweet moment for real. Rheumatology want to start me on adalimumab but need to do the necessary blood testing first. Is there any advice for when taking this medication? I've seen that it can cause you to become very prone to infections etc so im just curious about other's experiences

I've been to a rheumatologist after 20 years of back issues, after a few MRIs he is 99% certain I have AS but is waiting for 1 more MRI to make sure. I'm currently taking painkillers like smarties but my main question is how long from a diagnosis to actually getting onto biological drugs? He has already mentioned them. My symptoms are getting worse by the week. Is there anything I should be doing or avoiding? 39M UK. Any help would be much appreciated.

Question: 37 female. I had an x-ray (to get mri approval) and this came back as one of their findings. In the process of getting diagnosed and looking for imaging evidence. Is this evidence of AS? Or is cervical spondylosis and AS two completely different things?

***I am following up with my doctor. Just received these results heading into the weekend so was curious if anyone else has had anything similar or if this is unrelated to AS.

Thank you!!

So does a flare come and go? I feel like my son has had his flare up come months ago and it just doesn’t go? It seems rather permanent and I think it should be on its way, please and thank you. He is recently on naproxen and it doesn’t seem to bump his pain level much. Note: he is still in process of diagnosis; two blood tests (one said positive HLA-B27 so we were sent to rheumatologist where their blood test said negative HLA-B27). TPO is high, but TSH normal. Slightly positive ANA. Normal CRP and ESR. RA factor was neg. AI thyroid disease runs rampant on both sides of family; I have it and his sister has it. Ultrasound scheduled for knee and hip to look for enthesitis, tenosynovitis or synovitis… and I guess those are all AI arthritis related to RA or AS, right? It’s honestly so much to sort and wrap my head around.

This group has been incredibly helpful and supportive. I really appreciate any thoughtful insight to help me understand and/or ask better questions. Thank you.

Hey everyone! I have not been diagnosed with as. I have been doing my research on as. I don’t want to self diagnose myself until I see a specialist but all my symptoms point to as. I should be seeing a specialist soon but is there anything my primary doctor can do as far as testing goes? What was your symptoms before you got diagnosed? I am 25F.

My symptoms are-

• Extreme si joint pain in the morning. it is to the point I can’t walk.
• My si joint pain switches to different sides. sometimes I feel a burning sensation on both sides of my glutes
• I’ve had chest pain before
• Lower back pain
• Burning sensation while sitting down during my recent flare up. I haven’t had this before until my flare up on Sunday.
• Laying down helps give relief but if I try to move in a different position, then I’m in so much pain because of my si joint. I’m also in so much pain after I lay down.
• I am having trouble walking during this most recent flare up and having to use a wheelchair because my left si joint is causing me so much pain. i can barely put any pressure on my left leg without it giving out. my hips are extremely tight.
• I limp

34 years old, already failed Simponi, been on Rinvoq for nearly 3 months and for most of that time the pain was worse. Starting to get a bit concerned I won't find something that'll work for me.

So interested in hearing how many biologics did you have to try before you found meaningful relief/improvement.

Hello guys, since April of this year I started to get back pain in the morning and stifness that would last about an hour, once I start moving it gets better. The pain is in the region where my lumbar ends and my thoracic starts. Had an mri of that region and it showed edema, a shiny corner(romanus lesion), and sclerosis of the end plates. Negative hla-b27, normal crp and esr. Was prescribed anti inflammatory, arcoxia, and the pain goes away when I take it, but if I have a break like 2-3 days from it the pain si back on. Was seen by a rheumatologist and she concluded that all of the findings in my spine mri are really sugestive of AS, and my symptoms as well. She sent me for a sacro mri as well. What I want to ask you guys is if AS started for any of you in their spine and not si joints?

I was looking forward to my first rheumatology PT appointment but it was so disappointing. I went in expecting to be assessed but they took a brief history of my symptoms and then asked which body part I wanted to work on (?!)

I have restricted neck mobility, shoulder pain and what feels like muscular 'knots', knee damage, elbow pain and hip pain (although part of that is due to a non-AS related impingement). Quite a shopping list!

I reluctantly said okay, let's look at my neck as the mobility has been restricted for two decades. I only have about a 30 degree range of motion side to side. And the frustrating thing is no one has been able to explain why. My spine MRI showed no fusion in my neck. The PT said the MRI would have shown inflammation if it was present, but I'm not sure if that's right? I read here about enthesitis (I think that's what it's called) where tendons and ligaments get inflamed, so maybe that's what's causing my neck stiffness.

I came away with advice to do side to side neck stretches a couple of times a day and that was it. I honestly could have found more info here in this supportive group or elsewhere on the internet.

I guess I'll just make up my own PT routine. Sorry for the long post / semi-rant. Does anyone have advice for resources / routines / videos to follow?

Hey there. I have tried many meds, Humira, Cosentyx, Taltz, Methotrexate, and currently on Xeljanz. Tried all the nsaids in my teens when I first had symptoms with little improvement. I'm mid 30s now.

Humira and Taltz have done nothing at all. Cosentyx was great for pain, welling, and mobility. However, I was always sick. In the year I was on it I had strep throat twice, pneumonia once, bronchitis once, multiple sinus infections and GI bugs. Basically it killed my immune system. I work in Healthcare and am in contact with everything and can't be sick with it all.

While trying to get insurance to pay for Xeljanz (an 18 month debacle) I tried methotrexate. I only took it 3-4 months because it made My liver and kidney labs get bad fast so I had to stop it. Those months were amazing. I was able to move in ways I couldn't since middle school. I was able to work out and lose 40 lbs. I hadn't been able to do squats in decades due to my knee pain and swelling (first symptoms a long, long time ago.) With out them doubling in size and radiating heat and being red for days. I was up to doing 120 squats three days away with my routines. With in 3 weeks of stopping it I was miserable and could barely walk up my stairs.

Now, I am on the xeljanz with little change.

Has anyone started methotrexate and had bad labs but then have the labs get better with time? Like your body acclimated?

I really want to try it again. Getting that taste of normalcy has killed my spirit knowing I can be good but put of reach.

I had my first injection today after being diagnosed with probable AS this week. It might just be placebo but I swear my hip joints which have been flaring feel different. Still painful in the muscles but my joints feel… more lubricated? Hard to describe. Just wondering if anyone else has had that experience.

I had an appendectomy this year and it kind of reminds me of how I felt waking up from the surgery, like having the pain somewhat removed gave me perspective on just how bad it was.

But yeah it feels like I have had something Happening in my joints and now it is Happening slightly less. Weird.

Hey y’all. For context, I (22F) have had AS for just over 2 years now (woohoo) and recently had an MRI done that showed degenerative disc disease in L5-S1.

2 weeks ago I went to an acupuncturist and afterwards noticed that the area between my back dimples (around L5-S1 I think) was painful to the touch. I figured it was just the fact that I had needles in my back but over the past 2 weeks it has gotten much worse. Anytime my back is pressed against a chair, car seat, etc. it is so painful and makes me feel queasy. There are no puncture marks or obvious signs of infection. The pain is worse to the touch when I bend over.

I have been icing the area, using a heating pad, patches, etc. but nothing is helping. The pain has gotten so bad I cannot help but cry.

Essentially I’m curious if degenerative disc disease can be painful to the touch or if this is a completely different issue? Anyone have any advice?

Title. Cant find a lot of information about it. Some say they feel better DURING taking antibiotics, but i think this is mainly because of their anti-inflammatory property. Also is any reaktive arthritis lasts only for up to 1 year and then body adapts? So if it lasts longer than a year in my case – it is probably not a realtive arthritis and removing tonsils wont help?

I am on 8th jab of enbrel. I can say that my lower back pain is 85 % better I couldn't even imagine that i will be able to move my pelvis again . But my chest is killing me, everytime i have pain there, i am thinking of cancer, heart diseases etc I started trying being active again with some pull ups , push ups ( before the disease i was an mma fighter and generally very active) I have so much pain in the middle back and chest ( generally my upper back is super stiffed) like someone is putting a knife in me , plus the headaches from my neck especially when i am stressed. Is anyone else experience something like this?

I’ve been dragging my feet on starting methotrexate, the stories on here and general info online are horrific. But’s its a long weekend, and I can afford to feel a bit shitty if my body doesn’t react well, so took my first dose about an hour ago.

Not sure what I was expecting — instant projectile vomiting? debilitating headache? hairs dropping off my head in real-time? Maybe those will come eventually, but honestly the immediate sensation was light-headedness, almost exactly like a wine buzz?

I can almost pretend I’m enjoying an evening of solitary drinking, and not battling an autoimmune disease! Y’all should have told me, I would have started earlier!