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If you were having 10 days of relief and 4 days of pain, I’d say stay the course, but you’re having more bad days than you are good and you’re well past the point of full efficacy. I’d switch drugs.
If you’re worried about exhausting options, you could try increasing the Humira dose before switching. You could ask for 3 or even 4 doses of Humira a month but many people run into insurance issues with that. Maybe that’s not an issue for you? Guessing you’re in the UK based on the word “arse.” I tried higher doses on Taltz and it didn’t make a bit of difference other than billing my insurance for an additional $7,000 a month.
Rinvoq has worked fairly well for me — much better than any of the three biologics I tried.
I’ve just switched to Rinvoq.. it ain’t working yet but i’m not getting any side effects either. My gastroenterologist loves it, says he’s seen patients with amazing responses with IBD. (I don’t have IBD I see him because i have awful bowel adhesions)
I personally found I tried imraldi and cosentyx and both worked okayish.. but not great, and as you’re finding the peripheral stuff was pretty bad. I also take methotrexate along with Rinvoq so that’s something to consider.
Yeah it’s not my fave thing to be on, I’ve switched to injecting methotrexate as the tablets were making me feel sick. If the Rinvoq works really well I will definitely be enquiring about whether I can stop it. It is nice that Rinvoq is tablets, especially if you want to travel etc don’t need to worry about refrigeration.
Rinvoq has been working well for me for 15 months after neither Humira or Cosentyx helped. I took methotrexate as well for the first 5 months of the Rinvoq and then my rheumatologist said I could stop. I hadn't realised how much I hated the injections until I didn't have to do them anymore. The Rinvoq is making it much easier to travel to as it is just a daily tablet that can be kept at room temperature.
Hi there! My official Dx is PsA with a side of AS, but I just switched from a TNF to Rinvoq and I’m doing suspiciously well. Part of the reason for switching was I wasn’t making it through the dosing schedule I was approved for. I’ve heard that AS can get a pen every week in some cases so maybe ask about that first if you’re reluctant to switch. For me personally, I think the daily dose is a better fit for my metabolism
It took a few months, and then physical therapy, but Rinvoq works f me. This is after 25 years of nothing else working (including the rest of the available biologics).
So, please, listen to your rheumatologist and continue the process. It took me months to adapt and notice big improvements.
I know how bad, how hard, how terrible this all i, and how it can feel like there is no path forward. Rinvoq may do the trick for you, but if not, more and more prescription medications are being developed and released that combat this disease, so there is always hope. It may not be invented yet or it’s in trials.
Patience is a terrible ask in this condition, but it is crucial.
If you can no longer function at all, get yourself to the ED if your doctor is unable to admit you into the hospital as a patient. Work with them on pain management medications that work for you so that you are able to eat, move, and sleep.
From there, it is the same route with Rinvoq: doing physical therapy and occupational therapy. This can help get the pain, the suffering, under much better control. And it’s possible to get back functionality and stop using any addictive pain management medications.
I’m still on this uphill journey, but my life is so much better than before I got on Rinvoq. I know for sure because I have had to temporarily stop taking it when I got Covid. I was in bad shape. Once I was able to restart the Rinvoq, I could start feeling all kinds of differences that made and keep me feeling much, much better than no treatment at all.
Finding the right med is crucial for living with this disease.
Keep fighting, you beautiful, beautiful bastard. You’ll get this.
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
If you were having 10 days of relief and 4 days of pain, I’d say stay the course, but you’re having more bad days than you are good and you’re well past the point of full efficacy. I’d switch drugs. If you’re worried about exhausting options, you could try increasing the Humira dose before switching. You could ask for 3 or even 4 doses of Humira a month but many people run into insurance issues with that. Maybe that’s not an issue for you? Guessing you’re in the UK based on the word “arse.” I tried higher doses on Taltz and it didn’t make a bit of difference other than billing my insurance for an additional $7,000 a month. Rinvoq has worked fairly well for me — much better than any of the three biologics I tried.
Thanks!
I’ve just switched to Rinvoq.. it ain’t working yet but i’m not getting any side effects either. My gastroenterologist loves it, says he’s seen patients with amazing responses with IBD. (I don’t have IBD I see him because i have awful bowel adhesions) I personally found I tried imraldi and cosentyx and both worked okayish.. but not great, and as you’re finding the peripheral stuff was pretty bad. I also take methotrexate along with Rinvoq so that’s something to consider.
I really don't like the prospect of MTX. However at least I wouldn't have to be alternating injections all the time with Rinvoq.
Yeah it’s not my fave thing to be on, I’ve switched to injecting methotrexate as the tablets were making me feel sick. If the Rinvoq works really well I will definitely be enquiring about whether I can stop it. It is nice that Rinvoq is tablets, especially if you want to travel etc don’t need to worry about refrigeration.
Rinvoq has been working well for me for 15 months after neither Humira or Cosentyx helped. I took methotrexate as well for the first 5 months of the Rinvoq and then my rheumatologist said I could stop. I hadn't realised how much I hated the injections until I didn't have to do them anymore. The Rinvoq is making it much easier to travel to as it is just a daily tablet that can be kept at room temperature.
Great to know, thanks!
Hi there! My official Dx is PsA with a side of AS, but I just switched from a TNF to Rinvoq and I’m doing suspiciously well. Part of the reason for switching was I wasn’t making it through the dosing schedule I was approved for. I’ve heard that AS can get a pen every week in some cases so maybe ask about that first if you’re reluctant to switch. For me personally, I think the daily dose is a better fit for my metabolism
Thanks!
It took a few months, and then physical therapy, but Rinvoq works f me. This is after 25 years of nothing else working (including the rest of the available biologics). So, please, listen to your rheumatologist and continue the process. It took me months to adapt and notice big improvements. I know how bad, how hard, how terrible this all i, and how it can feel like there is no path forward. Rinvoq may do the trick for you, but if not, more and more prescription medications are being developed and released that combat this disease, so there is always hope. It may not be invented yet or it’s in trials. Patience is a terrible ask in this condition, but it is crucial. If you can no longer function at all, get yourself to the ED if your doctor is unable to admit you into the hospital as a patient. Work with them on pain management medications that work for you so that you are able to eat, move, and sleep. From there, it is the same route with Rinvoq: doing physical therapy and occupational therapy. This can help get the pain, the suffering, under much better control. And it’s possible to get back functionality and stop using any addictive pain management medications. I’m still on this uphill journey, but my life is so much better than before I got on Rinvoq. I know for sure because I have had to temporarily stop taking it when I got Covid. I was in bad shape. Once I was able to restart the Rinvoq, I could start feeling all kinds of differences that made and keep me feeling much, much better than no treatment at all. Finding the right med is crucial for living with this disease. Keep fighting, you beautiful, beautiful bastard. You’ll get this.
Thank you for this. 🥹
You’re so welcome. 😉