I’ve now been on cosentyx for around 7 months. I was put on the higher dose right from the start. I’ve had sub par control for a long time. I had a little teaser of what like could be like on rinvoq, And if there was the possibility of virtually no symptoms and no fatigue, but then I had a DVT and had to stop it.
I’m frustrated. While I had an initial response that was slow, it was definitely a response. But for the last almost a month I have been in rough shape again. Massive amounts of fatigue, joint pain and new joint pain. I put myself on a two-week course of nsaids and I think I created a new problem.
Can I still expect that it will improve again or is this it?
Stoney, I wish I had an answer for you. Maybe some of the other members could weigh in and this comment will bump it up. I am sorry for all your progress to be thwarted by a DVT. For me cosentyx only worked for about 2 years. Thats pretty much all I so now. Use a biologic for 2-3 years and switch. Everything stops working. I do hope they make more of them because I am running out of options. I am on Skyrizi now.
Considering that you have had better days, that is discouraging. Is it possible the DVT was unrelated to the Rinvoq and once managed go back on Rinvoq? Sometimes the wrong thing gets blamed. But obviously I’m no expert and some things just can’t be played with. I’ll be coming up to 2 years on Taltz and while I would like to to be better, I’m functioning pretty good but with stiffness and joint pain. Sure hope you can find your groove soon! I think we all miss @tntlamb chiming in!
When I first started to take Cosentyx I had an initial good response over the first 5 weeks. Remember this was my 3rd biologic and the first two just failed to work. So I was pretty discouraged in starting Cosentyx.
However after that first 5 weeks it just dipped and remained dipped until the end of month 8 and then it was like a switch flipped and it started working marvellously and lasted for a good 4 and half years.
If you follow Cosentyx pages on FB or wherever you will find the earliest people tend to see it working for PsA is from month 6. But you will also see people having to wait until month 10 and even one friend of mine waited until month 12.
So I would say month 7 is too early to call time on this one, more so since you had some initial positive response. You should have been supporting yourself on NSAIDs throughout though - remember chasing pain is frustrating - staying ahead of it makes for better stability always. I get my NSAIDS prescribed at the lowest dose so I choose each day what dose to take. Only when I’m sure a med is working well will I not take a dose. And I support myself with pain relief too even if it’s just paracetemol. I am prescribed Tramadol at the lowest dose also. I don’t expect the biologic to get rid of everything - I work on the basis it needs the support of NSAIDs and pain relief too more often than not.
At the 6 or 7 month stage I was as frustrated as you were too @Stoney but I was counselled by a friend of mine to just be more patient. It paid off for me.
However being more patient waiting for Tremfya (the one after Cosentyx) to start working didn’t pay off for me as we ditched it at 11 months. So the fact remains we just don’t know and the rheumys just don’t know. But if you work on the basis that you know you waited then there is less regret at ditching it too soon. Cosentyx is a slow beast to get moving - there’s a considerable amount of agreement on that so being more patient tends to have better results. I don’t think I’d throw any biologic away at just 7 months in unless I was suffering hellish side effects. Something to remember - it’s always darkest before dawn don’t forget.
Thank you! I needed that boost. I’m seeing my rheumatologist in the summer, at almost the 12 month mark, so it’ll be a better time to judge how it’s doing.
I did put myself on nsaids but had to take myself back off for now. I had a few episodes where I swallowed funny and couldn’t move air temporarily. Pretty scary and when I realized that the nsaids could be involved, I promptly stopped taking them. I do have an appointment with an ENT about the swallowing issue.
Basically if I’m taking more than a single dose of an anti-inflammatory I am taking Prilosec with it. That’s part of why I was extra surprised that that happened
Interesting. Some people can react to varying stomach protector meds so they might need to play around as to which one suits them. And we can do that even if we previously tolerated it too I believe. Something to also discuss with your ENT consultant.