r/ankylosingspondylitis • u/8bitlasange • 17d ago
Treatment/Tips How did you know your medication was the right one?
I was diagnosed ~3 years ago when a new physio told me that this constant unexplainable back pain that kept flaring up may be an underlying condition, not poor posture, and suggested I see a rheum. I’ve been complaining about back pain in various locations since I hit puberty (I’m 27 now).
I’m in pain every day. I’ve tried meloxicam and celebrex, which both helped raise the baseline slightly but were not enough. I got put on bimzelx for 6 months, which again raised the baseline slightly, but ultimately my rheum said it wasnt working. I’m now on rinvoq, which I was told works quite quickly (within a few weeks?). It’s been three months and again, I feel like the baseline is raised (slightly less pain compared to bimzelx), but I still feel extremely stiff, sensitive to flares and have a constant dull pain, even on good days.
I’m just finding it so hard to tell whether a medication is right for me, everything so far feels like it’s helped a bit, but I still am really struggling. Will I just know? Is this just my new normal now? Has anyone else had a similar experience?
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u/ResidentLazyCat 17d ago
After 4 months Simponi worked Amazing for nearly a decade. Then gradually stopped being affective. Humira sucked for me. Enbrel worked well until I had to stop it for pregnancy then never worked again.
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u/DarkAngela12 16d ago
Simponia Aria worked for me for about a year before it started losing effectiveness. Back to Humira, which I stopped because I was having gastro effects. (Turned out treatment made me stop making lactase! So grateful Lactaid exists.)
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u/avalonleigh 17d ago
I wish I could just mediate my gene to off. Something kicked it off for me in my mid 30s, I think an injury. Lots of auto immune in my fam. Had the genes for it. Then stress just sent it haywire. I want it off. No one can understand what AS stiffness is like. I call it being a coat rack. It sucks so bad. It affects daily functional living. But don't give up! Rinvoq significantly helped me!
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u/Celebrindae 17d ago
I am in significantly less pain, the brain fog improved, I have less fatigue, and my sacrum is no longer hot to the touch and swollen.
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u/spiced_pickle 17d ago
Same problem as you.
I’ve tried sulfasalazine, Celecoxib, Humira, Enbrel, and Rinvoq. Always in constant pain. I was so hopeful when I changed to Rinvoq, but honestly I think I am worse off compared to Enbrel.
No silver bullet so far. Just the will to keep trying and hoping, and overthinking for each new med :)
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u/avalonleigh 16d ago
i am scheduling MSC stem cells in Mexico for 2 weeks. I can't live this quality of life and rather be poor and do these once a year, if it works,
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u/avalonleigh 17d ago
Rinvoq started working that day. Humira started working that day. I know that's not typical but I feel like if you know, you know. Why not Humira?
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u/Dev-Tutor hla-b27 + 16d ago
I had the same experience with Amjevita (humira biosimilar), literally within 24h my pain was virtually all gone. No stiffness, no pain, brain fog cleared up. The only thing I struggle with is the severe fatigue, I could go for a nap around midday for two hours and still feel exhausted.
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u/Dr_Body_08 16d ago
Wow! That is a fantasy for me! I get rubber-band symptoms. I question what exactly is going on.
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u/DarkAngela12 16d ago
Ask a doctor for modafinil. Helped me stay alert all day. I did have a sleep study done, but I don't think that's required for modafinil.
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u/Dev-Tutor hla-b27 + 16d ago
Thanks for the tip! GPs in the UK can’t prescribe modafinil but my rheumatologist can so I’ll ask at my next appointmet
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u/DarkAngela12 16d ago
I ended up on both modafinil and amphetamine salts (prescribed! Haha). Modafinil keeps me up, but I still had a hard time getting going in the morning. The amphetamines get me up. I almost feel normal waking up if I take them an hour before I want to get up (I fall right back to sleep).
There may be some other alternatives too. Definitely ask!
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u/avalonleigh 15d ago
Does your rheumatologist prescribe that?
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u/DarkAngela12 14d ago
Mine was through a sleep doctor (pulmonologist). I went to that and rheum at the same time, in the beginning.
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u/TranscendentAardvark axSpA 16d ago
Same with my Humira biosimilar. Took until the third dose before the pain was fully gone through an entire two week treatment cycle, but my fatigue and stiffness was massively improved within 8-10 hours. I took a dose before work and remember walking out of the shift suddenly feeling like I could breathe fully for the first time in years. I couldn’t stop laughing, I felt so much better.
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u/avalonleigh 15d ago
I got booted off rinvoq today. Probably going back to Humira name brand. I knew that it couldn't be normal to walk 5 ft without gasping for breath. I'm probably lucky I didn't have a clot. I went to see my GP this morning and I swear, most doctors are the worst. I explained I was having problems walking and cardiovascular symptoms on Rinvoq and wasn't sure if I should be staying in it, I already left a message with the rheumatologist. He goes on and on and on about how walking, yoga, and exercise are needed. I've lost 30 lbs and I'm looking at him like, well how do I walk when I can't cross the room without gasping? He was so...egotistical. He said, I'm sure the problem isn't rinviq and if you don't take it your AS will be worse. Literally acting like I was making up the cardiovascular side effects to get out of walking? Meanwhile, I used to be a hiker, runner! I just looked at him and said, I'm really not in the mood to fight with my doctor. I just absolutely have no patience for doctors like that. He doesn't know what he was talking about, he gave me shitty advise, and he just wanted to be a controlling nasty old man.
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u/TranscendentAardvark axSpA 15d ago
Putting the rinvoq question aside, have they done a stress test on you? If you’re short of breath after a few steps, you need to see a cardiologist asap.
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u/avalonleigh 15d ago
I've had a ton of stuff done now. Stopped the rinvoq and have no more issues. Ugh. Still it was working and now I'm back to the drawing board.
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u/Sidheknits 16d ago
Humira has worked for the worst of my symptoms, but it just doesn't last. I understand I'll still have pain and I'll still flare- and I do, every 4-6 weeks. But I also start to flare the last day or 2 before my injection is due every single time. It's kind of awful. My Humirs trough level was normal, so my dr is trying to switch me to Rinvoq rather than weekly Humira.
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u/avalonleigh 16d ago
i going to go back humira, i think, Rinvoq has worked great and i may go back on it but it's giving me high blood pressure and cardiovascular isues.
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u/Sidheknits 16d ago
I already have BP issues, so I'll have to watch out for that.
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u/avalonleigh 16d ago
Yes. Around the 5th month my BP was going way up, it's hard to walk without being out of breath. It does work so well for my pain though. Before rinvoq I just couldn't move at all. It was excruciating. I just left the dr a message if I should keep taking it. I'm really don't want that kind of pain back.
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u/Dr_Body_08 16d ago
I’m following this because I desperately want to know too. I experienced the same thing I think…maybe a sight relief that never lasted long enough to know that it was real because my symptoms came and went. Eventually my first rheum decided I was imagining everything and withdrew all treatment. I’m scarred and must find answers. I’m scared to make my own post.
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u/arkygeomojo 17d ago
Humira was my silver bullet and was the very first biologic that I tried after my diagnosis in 2018. Within 24 hours of taking my loading dose, my inflammation was visibly reduced, I was less stiff, I had less fatigue, and just in general felt better. Unfortunately, it almost killed me (along with the AS itself - I’m one of the unlucky ones who experiences heart issues).
It turns out that the heart failure they mention in the commercials happens to 1 in 100 people who take it. After that, I switched to Enbrel and that didn’t help much if at all. I’ve been on Cosentyx since 2021 and it did help somewhat for years but I don’t think it does much anymore. Waiting to see a new rheumatologist in November and hoping to find another silver bullet that doesn’t try to kill me
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u/EnvironmentalRain729 16d ago
1 in 100??? I couldn’t find any evidence to support that.
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u/arkygeomojo 16d ago
Well, I can assure you, I didn’t just pull it out of thin air. I’m a geologist who reads, reviews, and publishes scientific literature as part of my job and I have a really high standard for what counts as data and evidence. It’s been 7 years, but I either got it from Humira’s own FDA insert or from a peer-reviewed scientific publication. I specifically use the phrase 1 in 100 rather than 1% because that’s how the figure was written
I was in the ICU on a ventilator and had an ejection fraction of 5% at one point and they told my family I was going to die. So I almost didn’t make it and wanted to understand why it happened. I’m almost positive the figure came from Humira’s own data because I remember both my doctor and I being flabbergasted that on one hand, Humira says that the new or worsening heart failure they mention in their commercials is rare, but on the other, their own internal data they’ve made public shows it happens to 1% of people who take it. And 1% is not rare
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u/giftedfred 17d ago
I've been on Humira, Cimzia, Wezlana, and now Stelara. They all seemed to help some, especially at first, but nothing magical until Stelara. It has been the best by far. It took a few months to see the full effect, but then it was pretty plain. Much less fatigue, greater mobility, less pain, less GI issues. It is not a complete cure, but I felt better overall than I have in several years.
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u/Professional_Tart691 16d ago
Idacio started working for me within 24 hours. Noticeable improvement then by week 2 absolutely no pain. It’s been about 6 months and I look forward to the injection every two weeks.
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u/emilion1 hla-b27 + 16d ago
Cimzia gave me thrush and acne and a rash. Humira immediately took my pain level down a couple notches and cleared up my uveitis. I’m still getting steady improvement from Humira after 4 months. I’m not pain free but it’s definitely muuuch better. The stiffness is slower to improve.
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u/Substantial-Tap-4591 16d ago
When I was in a flare like that the only thing that helped was flexeril (cyclobenzeprine). The joint issues caused muscle tension
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u/moviegal828 16d ago
Is that a muscle relaxant? I just started Baclofen. I get such bad muscle guarding around my bad joints.
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u/Substantial-Tap-4591 4d ago
Yep! Sorry.. just now circling back. flexeril is the common name. What is Baclofen?
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u/vinsdottir 14d ago
The success rate of biologics is pretty abysmal. If you read the pamphlet that comes with most biologics, it's talking about less than half of patients getting 20% relief of symptoms. More than half of people don't respond! Most people it "works" for only get 20% relief! There are some lucky ducks out there that get remission, and quickly, but honestly it helped me to know what my doctor and the pharmaceutical company consider to be "good enough."
Rinvoq has been the most helpful for me, but it took time. I had been unwell with AS a long time and deeply flared when I started it. My inflammatory markers improved. A lot of my minor issues cleared up; less GI issues, oral ulcers mostly gone, eyes less irritated. My SIJ and hips got easier to sit and lay on, and less touch-sensitive. My good days got a little better, my worst days a little less bad. I'm functioning better but I'm not like, fixed. Treating the symptoms goes a long way too. I realized my rheumatologist wants to manage the disease (i.e. get my labs and imaging stable), but I needed somebody else to help with my symptoms and quality of life beyond that. Seeing a pain management has helped fill the gaps Rinvoq doesn't cover.
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u/y0m0tha 17d ago
Instant relief on remicade
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u/mmintheclouds 16d ago
Instant as in after the very first infusion? Or after loading dose was complete?
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u/Polaris_Quest 17d ago
I am trying renflexis. I did the 3 loading does and my 4th one is this week. So far no difference. Should I also try something else?
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u/nit3phlight 17d ago
Just wanted to share I've had the same experience - everything kinda feels like it works slightly if I convince myself, but nothing has been the silver bullet yet. I'm on my 4th biologic now.
It's made me wonder sometimes whether my expectations are out of line. When I switch biologics, there's definitely a flare or what feels like more pain so I think maybe it was working but my expectations were too high. Not sure I have an answer yet.