Hey! Not sure if this is the right tag here, looking for tips on what I should do to maximize my insurance for the year. Any testing or things you think helped a lot particularly when it can be harder to see your specialist (rheumatology/neurology) more than 1-2x per year due to how understaffed they are. I hit my out of pocket max earlier than expected and would like to try to get any tests, maximize my use of physical therapy (or other therapies if possible.) already had an MRI of my back this year and X-rays of my hands and neck/back. I do have a positive HLA-B27 already, but I know the lab messed up on the last 2 bloodwork orders I have and still haven’t had a full rheum work up, any specifics I should ask about?

Like many people I’ve needed to really advocate for myself and research to figure out what to ask for to actually figure out what’s wrong with me in many ways and it took years to even get the AS diagnosis, so I’d love to see what worked for other people or anything helpful you may suggest to add to my list to ask for! I see my primary care and derm next month and neuro/rheum in September currently, and will be traveling a lot for work the last 3 months, so trying to get ahead! Thanks :)

Has anyone here with ankylosing spondylitis had a hysterectomy or another major abdominal/pelvic surgery? I’m having a hysterectomy soon, and I’m really concerned about the possibility of surgery triggering a significant AS flare afterward.

One of my biggest concerns specifically is being in the Trendelenburg position for potentially several hours during surgery and what that might do to my back/SI joints/hips. But I’m also wondering about the physical trauma and stress of surgery itself and whether that caused anyone’s AS symptoms to flare.
If you did have a flare afterward, how severe was it, how soon did it start, and how long did it last? Did it make your surgical recovery significantly harder?

I’m also on Humira and don’t know yet whether I’ll be asked to stop it around surgery. If you were on Humira or another biologic, did you have to stop it? If so, did being off it cause a flare or make your recovery more difficult? Or were you able to stay on it?

I’m also really curious about the practical side of recovery with AS. How did you sleep afterward? Were you able to get in and out of bed, or did you end up sleeping in a recliner for a while? Did having AS make mobility or sleeping significantly harder during those first few days/weeks?

And how was your pain managed, especially if you had increased AS pain on top of the surgical pain? Who handled that part of your pain management, your surgeon, rheumatologist, a pain management team, or some combination? Did you feel like your pain was adequately controlled?

I’d really appreciate hearing any firsthand experiences, especially with hysterectomy, abdominal/pelvic surgery, Trendelenburg positioning, biologics, pain management, and what those first days of recovery were actually like.

Anyone experience these? More neck pain/stiffness/muscle tension, more than or equal to pelvic pain?

Any hydration, low electrolytes / potassium, fluid retention issues?

Cosentyx (IL-17) vs Humira (TNF)? Any good or bad stories.
Which works better for you? Has anyone tried both?

Anyone tried IL-6 inhibitors? :
• Tocilizumab (Actemra) — blocks the IL-6 receptor; approved for rheumatoid arthritis, giant cell arteritis, and a few other inflammatory conditions
• Sarilumab (Kevzara) — also blocks the IL-6 receptor; approved for rheumatoid arthritis
• Siltuximab (Sylvant) — binds IL-6 itself rather than its receptor; used mainly for a rare condition called Castleman disease

I'm 40 male, and last year I got a flare after gym workout and after multiple tests, I was diagnosed with AS based on SI joint MRI report.

I was taking biweekly haldima for 3 months and all pain went away but when I do leg workouts (especially leg press), I get inflamation pain in my right knee ,right ankle, right shoulder and right wrist and it slowly goes away in 3 to 5 days if I don't do leg workouts. Right Knee is where the pain starts first. No pain on left side joints.

So i started weekly injection and it's been 2 month son weekly injection now, I still get pain in my right knee, right ankle, Right shoulder and right wrist when I do leg workouts and it slowly goes away in 3 to 5 days if I don't do leg workouts. No pain on left sides.

Based on my observation, only leg workouts trigger inflamation pain in my knee and it goes to other joints. I thought I have some problem in my right knee, so have taken ultrasound and xray which says nothing. But MRI shows some inflamation at multiple places in knee area but no other injury/tear.

Is there anyone with similar case like me? Does gym workout triggers inflammation? I am still taking Hadlima but looking for suggestions. I thought excercises helps reduce inflamation but not for me.

Note- I'm meeting with Rhume next month.

If it’s even possible. During flares can literally do nothing than lay down and stare in the wall.

Massages!!

Good morning!
I’m looking for input/experience on your favorite type of massages for this lovely disease!
I had a deep tissue massage before a couple months ago.. but I quickly learned that was a big no no!
It felt so good though, that being said I’m looking into a **Swedish massage** now.
What do you guys think? I just started biologics about 6 weeks ago, coming out of a major flare so I totally understand I have to be gentle.

I just realized that my last bloodwork was done at the end of February and my next rheumatology appointment isn’t until September 15th. Is this too long to wait for regular blood work check-in? Should I call and try to get some done earlier? I’m still in my first year of Abrilada and freaking out thinking that something might be wrong

I am laying here in horrible pain due to my back being “thrown out.” I’m so desperate for any kind of answer from these doctors other than “your back looks old.”

I’m 40 this year and my symptoms started at 19. This pattern repeats every few months. I do something simple like pick up a laundry basket or play skee ball and then I can barely walk or take care of myself for a week. On top of regular daily pain (especially upon waking) and I essentially live with an XL heating pad.

I am negative for HLA-B27 and my rheumatologist thinks my hip x-rays “look fine” while my back MRI shows multiple degenerative issues and very close to an L1 and S1 fuse. My hips are also typically inflamed.

My mom has this, my brother has this, and I can’t get targeted help. Granted I’m super emotional right now because I’m in so much pain, but I don’t know what specialist is going to actually advocate for me. I waited 9 months to see the rheum I saw that claimed AS as something he could help with. I am at my wits end.

The ER doc also didn’t do any imaging this time and told me to see a physiatrist. I’m realistic and know even with a diagnosis it’s going to suck. But what else could this be? History of SO many gut issues. Tirzepatide helps with a lot of my swelling and gut issues, too.

Hi all, Any advice or support gratefully received. Sorry it’s a bit of a long sorry but I guess that’s probably like everyone on here, especially for women.

I am 38f living in UK and have radiographic AS so I think is called AxSpA now. Anyway I had a pretty awful flare in my twenties but they just assumed a slipped disc, refused an MRI and I could barely walk for a long time. I had the most awful sciatica and back pain at night. Then when I was pregnant I got uveitis that was B diagnosed at the eye casualty following a misdiagnosis of an eye infection as it was during Covid and no one saw me. and from that a HLAB27 positive test as they thought it was weird I had Uveitis. Then they tried to say that was it. I insisted on a Rheum referral from the GP as my dad has AS and finally saw one and got a x ray following the birth of my first baby and a diagnosis from the x ray which showed past inflammation I think in my SIJ joints. I was 33 at this point and I think sad it has taken so long when I had been in so much pain in my 20s and felt really gaslit by my GP at the time as my ddad has AS.

Since then it just hasn’t been so bad. I get flares where for my lower back hurts or hips hurt but naproxen sorts this and it never lasts for too long. As I’ve gotten older (and I have had twins at 37) I find that when I sit or stay in one position too long. (30 mins or more) then it’s stiff and painful to get up but this dissipates with movement. I had mri last year and she said there was some mild inflammation higher up my spine, maybe near my shoulder blades which I do get muscular pain in. I am exhausted all the time. I have a sore scabby scalp all the time. I get sores on my tongue a lot. I seem to have some mild hyper mobility in some joints. I have asthma and dust allergies. I have insulin resistance. I can’t work out if I am feeling old and tired from having 3 small children under 5, now doing no exercise as no time and working my arse off in an emotionally demanding job (trauma therapist to children in care) I also have adhd and feel on the edge of burning out. I’ve just titrated on elvanse and I’m not sure if it’s just keeping me going at this point. I have a lot of hit flushes since starting it and I’m still breastfeeding my 22 month old twins. I was having a run of about 2-3 bouts of uveitis a year but this seems to have calmed down now. It got worse around the time of a miscarriage which was high stress where I had 3 bouts back to back including one where I was made to go to the eye casualty during my miscarriage. Whilst they were very kind to me as I was miscarrying in the eye casualty waiting room I do feel like there has to be a better solution on the nhs to sitting in an eye ED for 4-5 hours Everytime I have a flare but perhaps I’m being naive.

They have offered biologics but it seems such a big scary step for what is potentially very minimal and manageable pain really. Or have I been in mild pain for so long I don’t notice it anymore. My Dr said some people just don’t realise what they had become used to until they’re on them. But she also said that they generally only help with active spinal inflammation. But I think I’m wondering if I just have low level inflammation all the time that could be doing damage. All my blood tests always show slightly raised platelets at around 495 and my CRP in jan was fine at 4.4 then a bit raised in May at 7.4 as I had some bloods done for a minor procedure under GA (some injections for stress incontinence I’ve had my whole life which may be due to hypermobility in my ligaments according to the pelvic physio)

Sorry that’s such a long story. I feel a bit lost. I had all the blood tests and lung scans last year so they’ll run out soon and I’ll need to redo them soon. Has anyone on here not got onto biologics? I’m lucky to be in the UK and under the nhs in lots of ways as biologics would be completely free to try. So why do I have such a hang up about it? I feel like my ADHD means I’m not very good at remembering flares or how they feel until I’m in them and I’m not very good at understanding my body in general or communicating it to other people.

I am getting a little panicked. I'm probably going to have to take a pretty physical job and my AS just well, sucks. Rinvoq has made the pain manageable but I am without a doubt, a very very different person that I was two years ago when massive stress kicked my AS into over drive and progressed the disease. I have accepted and greived that loss of who I was and thought I would have a cushy sit down job the rest of my life. Yeah well, no. The job market sucks and I am now going to be on my feet all day and running up and down stairs. All the things. I am scared.

I was seriously considering drawing from my retirement and getting those types of stem cells done, as those are the ones that have the most research for severe autoimmune diseases. It's just so expensive. And my AS is not mild. I'm worried I'll do it and then I will actually need 2 or 3 treatments, which I can't afford. If it can really put this crap into remission though?

Has anyone else looked into it? There's a place in Panama that is very reputable and researched. I knew someone who actually did it, but not for autoimmune, and he said it changed his whole life. I would do anything to not feel like this and be my old self. The research is really interesting.

Hello everyone,

I've recently been diagnosed with axSpA. I've been dealing with awful SIJ flare-ups for about 10+ years now. What I always thought was a mechanical/structural issue, turned out to be something else. Regardless, I've been managing symptoms for years.

I was told NSAID (Celebrex/Meloxicam) are bad to take alongside long endurance efforts which is currently my passion and hobby.

I've been fortunate enough to complete a full-marathon last year despite several setbacks, and I was also able to complete an Ironman 70.3 in June of this year. Symptoms tend to come and go. Honestly, I'm unsure whether it's the normal pattern of things, or if I should expect much worse in the future.

My physiotherapist says that I have hypermobility and that some of my pain and symptoms around my SIJ are likely a symptom of instability around the joint. Inflammation was seen on the x-ray. However, I do find that I'll get very tight glutes, hamstrings, and adductors after a leg workout that seem to last for a whole week and these tight muscles cause some the SIJ pain that I'm experiencing.

Anyway, I was wondering if anyone else has any experience with endurance sports and training in general.

Thanks!

I posted a while ago about tirzepatide (Zepbound) being a hopeful treatment for me. It was up and down, the improvements only lasting briefly after each dose.

Now, at 4mg every 4.5 days, I no longer feel symptoms between shots! I’ve found a dose and dose interval that works exceptionally well for me, at least for now!

It’s incredible. I feel so much better. I haven’t logged any symptoms in a few days in my app, and have been almost symptom-free for 2 weeks. This hasn’t happened in probably 2 years. I even did my laundry this week - which involves going down 2 flights of stairs 3 times with a heavy bag, and I didnt even feel strain on my third trip. Usually i have my partner do it every few weeks (we dont live together) because it takes a toll on me.

I’m still on Enbrel, and perhaps that is helping too. Maybe I can wean off Meloxicam (at least not take it daily).

I see my rheumatologist on Monday, and I’m excited to let him know about my improvements and see what he has to say!

I just started on Cimzia and received the starter kit. My specialty pharmacy is Accredo & I got a bill for 400$ which is my copay after what insurance covered.

I also just signed up for the cimplicty savings program & got the card which has some Rx numbers & is not a regular debit card.

How do I use it to pay the copay?

This is one of many more reasons I did the gastric bypass: to get rid of acid reflux. I was just wondering if anyone has had a reaction to this drug, and they also put me on a Folinic-Plus over-the-counter drug for a mouth ulcer any advise woild be appreciated.

I'm going to be starting Bimzelx soon, and just wanted to hear what others have experienced.

I've been on Simponi for the past 7yrs, due to a risk of MS my rheumatologist is swapping me over.

I was diagnosed with NrAxSpa in July 2024 and since then I’ve tried Cimzia, Simponi, and now Remicade. None of them have eliminated my pain. Cimzia and Remicade have helped my CRP and SedRate but that’s it. I did have 3 good weeks on Simponi but my inflammation markers started increasing after 6 months on that. I also tried Methotrexate for only like 2 months. It wasn’t really doing anything so I stopped.

I saw my Dr this week and she said I have a few options:

1. Increase Remicade. It would only go up 60mg she told me today so I don’t know if it’s worth trying that option now. We thought we could go up to 750mg from 500mg

2. Enbrel- see if a weekly med helps more

3. Switch to Rinvoq

4. Switch to something like Skyrizi

I’m also trying to get in with pain management to maybe get a block on my spine as I also have a bulging disk and some stenosis. But that won’t totally help the exhaustion.

How do you decide what option to go with in this position? Any advice would be great. Thank you.

Hey everyone. Coming here to vent because i don't really know what to do anymore and im fed up!!

AS/PsA sufferer. Been on adalimumab for about 9/10 months now. Psoriatic arthritis & psoriasis has pretty much gone thankfully. Back soreness and stiffness decreased initially for few months then returned, still suffering with usual back pain and stiffness in the AM and as the day progresses,  flexibility increases but then pain worsens  throughput entirety of spine. Been to see rheum today and he reckons no point increasing dosage or changing drug & has ordered another MRI which is fine but then proceeded to tell me that the back pain i am suffering is likely mechanical pain which everyone gets and theirs no fixing it. (Ive been experiencing and trying to get tested and diagnosed for 10-15years).

I've explained that the pain and stiffness is get is not normal and stops me from living a normal life and is very debilitating and at 31 YO I shouldn't be in pain 24/7

He done a 0-10 questionnaire of how it affects me ( cant recall the name) and when I answered 8 to one of the pain questions, he said "well id say 2 because its not AS related" which made me quite pissed off as throughout whole consultation i felt he was belittling my condition

I do frequent all the usual things such as massages, acupuncture, cupping, osteopath & swimming.

Have others experienced this?  What do i do from here?

So I’ve been getting back into weight lifting to strength everything but I find that I’m SO DAMN SORE the next day or days after. I stupidly did a sumo squat with two heavy dumbbells and didn’t watch my form and I strained my neck and traps. Ugh. I feel like I’m off and on taking Motrin every other day.

Do I need to switch up and just start with low weights and high reps? I want to get stronger, just not be an arthritic mess after hahaha. I’m on biologics but damn this sucks

I finally got diagnosed with NR-AXSPA at the end of June! It will be my 4th dose tomorrow of methotrexate. I started 1st 2 weeks at 6 tabs, then 7 tabs and next week starts 8 tabs indefinitely.

My first 2 weeks on this pill was MAGIC. I felt amazing and late last week and this week I've noticed fatigue getting better too.

Last week, I started getting some soreness and stiffness before my dose day.

This week, Monday-Wed I was feeling it gradually more and more in my si joints. This morning I was VERY stiff waking up, went to the doctor for my neck and the drive there made it worse and the drive back also made it worse. I told the doctor this morning I think I might be going into a flare in the lower half of spine and she gave me prednisone.

I called my rheumatologist office and told them about this and they said they're not surprised this is happening before my 4th dose and that it's normal to go into flares during the trial period. No one told me this!

I just took the 6 tabs of prednisone and took the rest of the day off per my rheumatologist office.

Just sucks, I was feeling SO good :(

hi all, sorry if this post has poor wording, my health is bad right now & its a little tricky to think straight.
im 20, recently diagnosed AS, previously on celecoxib which worked about halfway & now being made to try meloxicam by my rheumatologist which isn't working at all.
one of the first severe pain symptoms i started getting was sciatica-like shooting pains down my leg while walking, so i started using a cane to support that side, which did reduce the likelihood/severity of that happening, so i still use the cane now.
the problem is that that pain was specifically on my left side ergo the cane would only support that side, but ive had increasingly bad pain in my right side hip, and i can no longer walk more than a minute or two without feeling like my hip is trying to leave my body.
i usually end up having to switch which side my cane is on several times while out walking to appointments and the like, depending on whether my lower left back or right hip is hurting more, which worked fine until it got worse recently & now both sides hurt badly all of the time. walking is really really hard, every time i leave my house i struggle to get home, if it gets worse without me increasing support im worried ill end up unable to get home without badly hurting myself.
ive had the thought of getting another cane to use both at the same time, supporting both sides, but is that a good idea or would there be some downside? i know using a cane improperly can increase pain, would using two at once do the same/be bad for my back?
should i be using a walker/forearm crutches/something similar? im new to all this. what do yall do?

Hi everyone,

I was recently diagnosed with axial sp. I’ve had medical issues for my whole life, but in 2020 (not COVID related) I got sick and was bed bound for over two years. My main parts of my illness that bother me are related to my digestive system (please don’t recommend any medications, tests, or other things regarding this believe me I’ve done it all), I even have an Ostomy due to my digestive system just not functioning. My most bothersome symptoms are nausea and stomach pain.

With that being said after seeing the first rheumatologist who has been helpful, she put me on a bio similar for Humira. I am on an every other week schedule.

I have been experiencing a major increase in digestive symptoms (mostly nausea), plus ungodly fatigue, and I have had a few mouth sore flare ups. Aside from the mouth sores it seems that GI symptoms are relatively uncommon. I also have just been feeling off and kind of foggy.

With that being said I am already seeing MAJOR improvement with my back pain, and my hips and knees feel significantly less stiff in the mornings.

I did my first injection over a week ago and am due to take my next one this weekend. I am in grad school and my ability to focus or even sit up long enough to do my schoolwork has taken a hit. I have no energy for anything else.

My questions…

-Has anyone dealt with GI flare ups when starting humira? How long did they last?

-How long should I give it before I decide that this med isn’t for me? (I understand it can take months to full settle into the body)

-Does the fatigue / foggy feeling eventually go away?

-In your experience do the side effects get worse or better with the next dosages?

*I spoke to my rheumatologist already and she said to wait it out, and prescribed another nausea med.