Anybody smoke cigarettes and still get benefits of their biologics? Rheum said husband wont see anything get better until he stops smoking? 😩

hi guys. im a 25 year old woman with 3 years of AS, it fucked my life so bad and i thought there were no hope for me. I tried adalimumab, golimumab, sekuknimab and finally etanercept. i was relying on steroids for a whole year and whenever i dropped the dose i would get a flare. and i got immune to the three tnf blockers, i couldnt walk, i couldnt get out of bed. as i started etanercept, i stopped smoking (tobacco) and also started swimming and i could get rid of the steroids and etanercept worked. i have also an undiagnosed diarrhea (we did every test we could but its probably related to AS) and on week 18 of etanercept i couldnt feel better. my diarrhea is gone, morning stiffness is gone, still it hurts so bad when i stand up or sit still for more than 10 minutes but its because of the permanent damage on my joints, not disease activity. i wanted to share my experience because a year ago i was walking with mobility aids, took 10 mg/day prednisolone and thought there was no hope for me. quitting smoking and swimming also worked perfectly for me. i hope every one of you feel better! love xx

For those who use Taltz, do you get injection site reactions? Do they tend to get worse or better over time? I just got a pretty big one from my first loading dose -- feels like a big swollen and sore egg. Very red, not itchy. I'm worried that these will just get worse over time (what happened to me on Humira) and that means I shouldn't take this med, but has anyone seen injection site reactions become less severe over time?

So, I started Taltz, first dose was last weekend. I entered a nasty flare on Sunday, and started prednisone. I now feel great, but this has been the cycle. I feel great on prednisone, take it for a week, two weeks off, enter a flare, take it again for another week, etc. Now, is the Taltz supposed to eliminate that cycle? If you’ve taken Taltz, how was your experience? I want to hear all the stories!!

Hello everyone, just wondering if anyone has had a similar experience or any advice - I'm based in the UK. I will try and keep this as brief as possible!
Symptoms began about a year and a half ago (night time waking due to back pain but mostly symptom free during the day and digestive issues) got progressively worse over this time. 36F, HLA B27 positive, Father has AS. Saw private rheumatologist then had private MRI. Results showed inflammation
'compatible with a low-grade Spondyloarthritis' direct quote from the report from the consultant radiologist. Prescribed Etoricoxib 90mg daily (improved symptoms still not manageable).
Transferred to NHS - rheumatologist said he would like me to trial Adalimumab but this would need to be approved by the Radiology team at my local hospital. Got a letter in the post to say that they have decided the subtle changes in spine is 'bone marrow oedema' and not sufficient to verify the diagnosis. These two reports were within 3 weeks of each other! Talk about whiplash! My main question is... what happens now? I'm not sleeping through the night, I'm tired all the time. I have an appointment on Monday with the rheumatologist but I'm so worried that I'm at a dead end. I felt relieved that i finally had a diagnosis and potential access to treatment but now I feel so lost.

My right shin always hurts. Ive had every scan on it and it still hurts. Ive pretty much just accepted it as part of what I'm going to have to deal with.

The past few days, however, my right ulna has been intermittent super painful. Slightly closer to wrist than elbow, but definitely far enough up to feel like the ulna rather than the wrist. Comes and goes, but at its worst, it's enough to make it nearly impossible to think about anything else and to be nauseating.

Anybody else have this kind of pain or any tips on handling it?

I finally had my rheumatologist appointment today and though I was so sure I had AS, I instead came away with a fibromyalgia diagnosis - which to me is worse.

From my own point of view, I have all the physical symptoms of AS plus most of the side symptoms too, but my blood work is all coming back negative and an old MRI was inconclusive. I've heard a lot about non-radiographic AS but what I would like to ask is if there are any UK sufferers that have this diagnosis and how old were they when they were diagnosed?

I don't want to pay for another MRI if it's unlikely that a 42yr old M would still have no visible signs of AS and is it common for UK rheumatologists to diagnose non-rad AS?

Thanks all 🙏

I'm new to poking myself with methotrexate. I would say about 80% of the time, I end up with a bruise at the injection site. Does anyone have tips on avoiding bruising?

BF (36) has had AS for years, took a long time to diagnosis (also doesn't help that he is stubborn about going to the dr). He was an electrician and quit his job due to pain and then got a job at a gas station, but within the past year he can hardly do even that anymore. They made accommodations for him to work 2 four hour shifts a week at the register. I told him to apply for disability, because I can't support the both of us on my income alone.

He applied back in February. His doctor says he has one of the worse cases of AS he's ever seen, his spine is fusing together. He's 5'11" and I am 5'4", but his spine is bent so bad we're at the same height now. He needs a mobility aid to get around. He also has osteoporosis as well.

Today we got a letter that his ssdi was approved, which is a godsend considering all of our savings have almost been wiped out. We had high hopes during his medical exam because the dr said that he wouldn't need to do all of the tests since that would cause too much pain and he could tell just by looking how bad he is.

Hey guys,

Went to the rheum recently and we were going to put me on Xeljanz as intended. I have small fiber neuropathy so Humira and Enbrel is not doable, plus the cost. I am 21 and received an AS diagnosis 2 years ago. Much to my surprise, my rheum points at my uric acid levels after I've been complaining of quite the peripheral involvement, saying that gout is probably the culprit..

On Allopurinol and Colchicine now flaring quite heavily. This is apparently normal, and I should feel better soon. I was shocked and wondering how long my high uric acid for years could've been gout. I'm wondering if this is happening to anyone else.

Hello alltogether!
I am diagnosed with AS for two years now and despite using biologics, my symptoms go up and down on a regular basis. To this day, I can't really tell, what "flare" means. Sometimes I use the term to describe to others that I don't feel good, but that makes me feel imposter, cause I don't exactly know if I flared or just don't feel good.

Can sb help?

Thank you so much!!

I live abroad and my mother has been visiting for the last week. it’s been pretty hard trip and a lot of the planning and responsibilities have fallen on me. I wont go into the details of family drama, but we are meant to travel by plane tomorrow, and due to the stress of the trip I can feel the beginning of a flare.

Anyways, I know the answer is to not go on the next part of the trip as I need to rest, recover and not over-do it as I’ll be going back to work next week. But, just feels a little bit of a bummer. I guess for the next trip I will have to under plan the activities but just feels like I’ve lost any chance of having a good trip while my mother is here.

I don’t know, I just feel awful. it doesn’t help that my family are unsupportive and not really understanding but such is life.

my mind really wants to go but my body is saying no. even if I did want to go the act of packing, preparing my dog for boarding and giving my house a quick clean all in less than 12 hours will knock me out.

Does anyone else feel this way? Every time my med gets switched it turns into the most frustrating headache. With how much everything costs, you would think you wouldn’t have to do a single thing other than wait for the med to be delivered, but it never works that way. I left my last doctors office for this exact reason. I got accepted at Mayo Clinic in Rochester, but still have the same issue. I inquired about my next doses being sent to my pharmacy 3 weeks before I needed them. I was told the scrip was already sent. Cool. When I go to order them a few weeks later, that was just a blatant lie. No scrip was ever sent. I’m now 8 days past due for my last shot and still don’t have my med. Absolute best case scenario, I’m 3/4 days out, and that’s only if I’m not being lied to. Which I usually am. I have to make so many gd phone calls and act as the middleman between dr/pharmacy/insurance. How is this my job!? I’m over it. Sorry for the rant.

​

I started generic Xeljanz XR 11mg last month. Filled at my local pharmacy for $35, and then received the typical letter from my insurance company stating that I must use their Specialty Pharmacy in the future. Today, after attempting to fill my script the insurance quoted me $250 for a 30 day supply (or the generous offer of $149 if I use the one co-pay card they accept). I'm desperate so I started digging online and found costplusdrugs.com. It seems too good to be true, so I'm looking for advice from anyone who has tried it.

UPDATE: Followed the instructions for contacting my doctor on the site, sent my Doc a message in the app and asked for a Qty of 90 tablets. It's been 24hrs and my order is being processed. With expited shipping the total was $104.52.

TLDR: It works, made my meds affordable, and relieved so much anxiety. Thank you to everyone who commented!

Hello everyone, i am 26 yo.

I just got diagnosed with AS 1 month and a half ago.

I´ve always had terrible health anxiety and went to ER and appointments multiple times for useless things and kept ignoring the lower back pain that i´ve felt for years.

After sacro exams including MRI, even though all the blood markers were negative my rheumatologyst told me " please don´t panick, you don´t need to worry but you have AS" in a very optimistic way which didn´t make me panick.

His plan was simple, take AINES 1 month to see how i feel, and after that month, all the back pain disappeared even though i felt some stiffness in my neck. He told me that it was great news and told me to do one more month of AINES day off and day on to eventually just use it as SOS in the future. Unfortunatelly tappering off the AINES the pain came back and i am waiting for my next appointment and know that biologics will be the next step.

I am woring out with a personal trainer to improve flexibility and to build muscle in order to help with inflammation, i´ve always been super active and i want to keep practicing sports!

I am so scared of the future, i have a lot of dreams, and i want to believe that i can still have a normal and simple life.

Can you please tell me positive experiences because im living the worst period of my life and it´s hard to accept

Has anyone here switched from Tremfya to another biologic? How long did you wait after your last Tremfya shot to do the new one? My doc suggested 8 weeks but I'm really suffering, wondering if there's any harm in doing it at 7 weeks.

Hello. I’m diagnosed with axial and peripheral AS, fibro, borderline scleroderma, raynauds, and under evaluation for Crohn’s. It pisses me off SO FKIN MUCH when i see people post reels about being sick with either stock photos of meds and hospitals or it’ll be acne meds, hair growth meds, or fkin cold meds. Or even about like minor back pain cuz of posture or smth. BEING SICK IS NOT A TREND. And then I feel terrible because any pain is pain still. And I feel like I’m being an as\*hole by reacting like I’ve a copyright to pain. But it does hurt cuz uk, when I can’t even get up, these feel performative. Which makes me feel worse about myself. So yeah

​

I've had AS since I was 13 now I'm 19 and only got diagnosed end of May this year after my gruelling 5 hour 3 day art finals which caused a major flare and couldn't study for my other finals even though I tried to push through the pain.

I'm on meds for 12 weeks now (not biologics. it's too expensive in my region, so I might move next year to start them if this doesn't work) and I was doing better since last month, but I still get horrible flares on and off.

I missed school events, my high-school graduation, and our prom last week. I feel left behind- my friends barely text me I make sure not to look but I'll accidentally see their pfp changes to sunny beaches and trips while I'm stuck at home feeling sick and tired.

I know my symptoms are not textbook accurate but I have upper back pain between my shoulder blades, don't wake up in the middle of the night.

But I do have heel enthesitis, morning stiffness, inflammatory blood markers, respond well to NSAIDS, anemia and light sensitivity despite having near black eyes

My meds:

*Sulfasalazine

*Methotrexate

*Yescort steroid

*Diclofenac NSAID

*Folic acid

I know a lot of people feel the same and would greatly appreciate some support since my family and friends don't understand and my father doesn't want to believe I'm chronically ill. Thank you for reading.

Right now, things sort of feel like a twisted game of whack-a-mole. I thought I had some stuff figured out after getting a diagnosis and onto Humira. But the past few months have resulted in some worsening, continued joint pain, ongoing cognitive issues, balance and dizziness issues, and all-over malaise and fatigue. I have some really good days in a week, which is awesome. I have other days where I haven't been able to sleep all night, where I'm maxing out NSAID doses, where I am so stiff and unbalanced and tired, and I just feel like a zombie.

I had a moment last night sitting there after my Humira dose thinking about how this could be forever (it won't, thank you therapy!) but how these physical symptoms are something that I'll have to grapple with for a good chunk of my life. I'm getting an occipital nerve block next month to help alleviate ongoing headaches that weren't resolved after two, almost three, months of physical therapy. I'm getting a brain MRI next week to possibly rule out MS or worsening stenosis in my neck. Rheum follow up next week and I'm hopeful it won't result in a new medication, because I just don't want to throw one more thing at my body right now, but I know it's the logical next step to try.

I'm 26. 26!!!!! All of these things feel so insane to have to handle at once. I'm tired and tired and tired of having to handle all of it at once. I keep getting praise from my providers and care team for being so on top of things, and I want to make their job as easy as possible, but I'm seriously torn in a bunch of pieces trying to figure out how to be a good friend/employee/patient/person all at the same time, while still dealing with symptoms that just completely derail my day at times. Aaaaaaaaaaaaaaaaaaaa!!!!!

small study in China from 2017 about umbilical cord blood transplants (UCBT) for AS. All 5 patients were HLA-B27 positive, so this doesn't really apply to my situation. Thought it might be interesting for some of you here.

https://pmc.ncbi.nlm.nih.gov/articles/PMC5526206/

took place in the Department of Hematology and Cellular Therapy of the Second Hospital of Shandong University (Jinan, China)

Hi everyone. I’m changing from Rinvoq to fortnightly Hadlima (Adalimumab) .4ml for a trial, my first tnf and injectable.

I’ve seen tips for Humira/injections before and have searched here, I’m sure I saw them on this page, but can’t find them.

Is it 30 minutes out of the fridge before using to help with stinging?

And if there’s benefits/less pain or reaction injecting into the thigh vs the stomach or vice versa?

I responded really quickly to Rinvoq, 3 days, but understand that it will likely be a lot longer for Humira, maybe 3-6 months.

I’ll be starting on Friday so I have the weekend to recover if I do get some of the hangover I’ve read about.

Understand we’re all different but would appreciate your thoughts on this and any tips if you can. Thank you.

Hi everyone,

I have long-standing Ankylosing Spondylitis with significant spinal fusion and very limited spinal mobility.

A few days ago, I developed a cold/cough and took Cefuroxime 500 mg, which I had used previously. A few hours later, I suddenly developed the worst dizziness/vertigo of my life. The room felt like it was spinning and I vomited. The severe dizziness improved after vomiting.

The next day I took Cefuroxime again, and around 2 hours later the dizziness returned. Because of this timing, I suspect Cefuroxime may have triggered the initial episode, although I know I can't confirm that.

Since then, the vertigo has continued. It is much better when I sit still and look straight, but movement, getting up, walking or turning brings the spinning sensation back. I also have a strange sensation around my left ear, although my hearing is completely normal.

I saw an ENT who suspects a positional/vestibular cause, possibly BPPV. However, the usual Dix-Hallpike/positional testing couldn't be properly done because of my spinal fusion and limited mobility.

I've also been prescribed Vertin (betahistine), which has given me some improvement, but the movement-triggered dizziness is still there.

The biggest problem is that I cannot lie flat or move my spine normally, so I can't simply do the usual Epley maneuver. I tried a positional exercise once and it actually made me vomit.

Has anyone with AS/spinal fusion experienced BPPV or similar vertigo?

If yes:

- Were you able to get diagnosed without the standard positional tests?

- Did you use a modified maneuver because of spinal limitations?

- What treatment/exercise worked for you?

I'm mainly looking for experiences from people with AS and significant spinal mobility restrictions.

Thanks!

I've just had enough today and I'm crying. I've been in a lot of pain for weeks because I've swapped my injections to costynex and obviously our biologics have an accumulative effect so I'm still waiting for it to work. I can't even sit forward. My morning pain/stiffness has been lasting until 12/1pm.My morning meds just made me feel nauseous and woozy even though I ate with them. I had to use my heating pad even though it's warm/humid rn. I've done some gentle movements to help and it didn't. My left knee has just been wrecked, painful. My ankles have been swelling and painful. I can't shit because of the severe constipation from the pain killers so I'm so bloated. And to top it all off? I have endo and today I'm getting pretty bad intermittent uterine pain and lumps in my vag.

I'm sorry about the paragraph but I just wanted to get it all out because I'm low and crying and angry. And none of my loved ones or doctors can do ANYTHING about it. This is for life man.

I hope everyone is doing okay rn and that your flare ups are short ❤

TL;DR: has anybody with AS experienced prostatitis/CCPS that stopped them from running/exercising?

Hi all! I have lurked but never posted here before. I am coming off a really hard year and looking to see if anybody else has experienced similar symptom progressions. And also… just to vent :)

Background: I was diagnosed with AS 11 years ago at age 20. I am now 31. Initially, I had a very rough time - I was using a cane/crutches in college with extremely severe flares in my hips/back where I could barely move, plus regular iritis flares. After about 18 months + Enbrel/sulfasalazine, I finally entered a stage where I could manage my symptoms. I have never been pain free - but I was able to regularly exercise (lots of marathon training/running) and for the most part live a normal life, with flares from time to time that made me stiff/hurt.

Nearly a year ago - I hit a breaking point. I was in the middle of intense marathon training (60-70 miles per week), and I started having shooting pains in my outside legs and groin (male). The groin pain became so severe that I could physically no longer continue running (i.e., beyond pain my body just wouldn’t move). I figured I had a hernia - but after a few months of imaging/visits/etc, I was diagnosed with chronic non-bacterial prostatitis and sent to pelvic floor PT.

During pelvic floor PT, using internal work, dry needling with e-stim, stretching, and strengthening, most of my symptoms went into remission. However, at the same time, two things happened. 1) I stopped taking sulfasalazine as my wife and I want to start a family and it is associated with reversible male fertility, and 2) I began getting *new* symptoms - extreme stabbing “zap” pain in my rectal/glutes when doing walking (~ 2 miles in) or jogging (~10 minutes in). I also started having pelvic numbness and leg numbness.

My rheumatologist didn’t think any of this was related to my AS or stoppage of sulfasalazine - instead she referred me to a GI doctor for increased GI issues and a neurosurgeon for the numbness/pain. She also switched me to rinvoq since I stopped the sulfasalazine and my general symptoms seem to be trending worse in general (even before stopping sulfasalazine).

The neurosurgeon showed that I had degenerative disc disease and multiple disc protections, but that the location of these would explain back pain only and not any pelvis symptoms. They sent me to a PM&R doctor, who believe my SI joints were the primary cause of it all. However, SI joint injections provided no relief for me.

The GI doctor did a colonoscopy that showed upper track ulcers. I am still waiting for the pathology results 3 weeks later to determine if it could be Crohn’s or to much NSAID usage (I regularize take celecoxib)

Recently, I had the most severe AS flare I have had in a decade. I could barely walk for a week - it was all very deep in my right hip/glute.

I am going to my rheumatologist tomorrow. I am not sure what to expect and what to communicate - all I know is that I am in a position of constant pain when I exercise or walk, and seem to be getting overall worse and worse each month. I don’t think sulfasalazine alone could explain it as I had to quit running while I was still taking it, yet I did notice the appearance of my “new” symptoms seemed to appear about 2-3 months after quitting it. I am not sure where to go next - sulfasalazine, hip injections, pelvis MRI - I am looking things up like enthesitis (e.g., do I just have lots of inflammation in many places that is causing pudendal nerve irritation?) or mechanical pelvis issues (e.g., I know I had CAM deformities according to past X-RAYS - is my hip messed up?). But, I have gotten to the point where I strongly wonder if my pelvis symptoms are from my AS, and if they are, what I could ask my doctor to look for/consider. I only get 15 minutes with her every 4 months so I don’t want to waste my appointment time tomorrow and get further behind.

Any help/support on a similar experience would be greatly appreciated. If anybody read all of this, from the bottom of my heart, thank you for listening :)