Rinvoq feedback
Hi All,
I had a question for any Rinvoq users out there. I started Rinvoq about 10 weeks ago. My first two months had been at 45mg a day and I had really nice results. At the beginning of week 9, I was dropped to 15mg a day for maintenance and I noticed some symptoms starting to return at around 7 days after the drop down. Not crazy bad, but stool issues(small amount of blood and very loose) and more nausea. (guessing its a side effect more then the UC) My first question is have any other users noticed this? My Dr just had me bump back to 30mg a day starting today. Have any of you had experience or can offer encouragement that playing with the dosage makes a big difference and that it can be balanced?. It kinds of rips your heart out when you see the progress and when you drop down and regress all the questions start to run through your head again. Any uplifting input would be great. I'll take the bad too, but prefer better news. Thanks!
I tried Rinvoq just last month at 45mg and it made me ill. They dropped me to 30mg to see if I would tolerate it but it was still a no. I am being switched to Skyrizi now. Prior to the change to Rinvoq I was on Xeljanz and loved it but they wanted to change me since it has been about three years and my blood work and colonoscopies weren't the best.
I know how you feel about feeling crushed when you switch meds or dosing. It is so tough to feel great and then go backwards and start dealing with symptoms again. I am literally going through this right now. You aren't alone.
To answer your question, I definitely see difference in symptoms when there is dosage change. I think maybe tell your doctor that you felt great on Rinvoq at 45mg and ask to be put back there. I wonder why the change from the beginning? 45mg is the appropriate dose for IBD.
Don't get discouraged. You know you were feeling better on 45mg so that's a great thing, and you can get back there.
Best of luck. Keep us posted.
-Elizabeth (team member)Hi Elizabeth, Thank you for the response. I beleive that Rinvoq recommends the protocol of bringing down from 45mg to 15 mg, so I am guessing he tried that path. I am back up to 30mg, so I guess I will see where that takes me. I am hoping you are right on knowing that 45mg works. I just hope it wasn't the remains of the prednisone as I was coming off that when I started Rinvoq! (fingers crossed)
I am sorry you still continue to struggle on your side. When you say the Rinvoq made you ill, was it the nausea or other things. Anyways, I love the work you folks do with this site. I read the article posted yesterday about being crushed when a new med does not work and it really hit home. Well lets hope all of us find the formula to feel better.
ThanksI hear you. Yes, the Prednisone could definitely have helped. I guess the only way to be sure is going back up to 45mg? I was unaware that it was recommended to go down to 15mg. I guess I didn't make it that far?
For me when I was put on the Rinvoq it gave me fever, stomach cramping, some urgency and overall I felt like I was in a flare. It was quite strange. I had the same thing happen to me when I was put on Azathioprine. But the second I stopped the Rinvoq the fever and symptoms went away immediately. So I had a weird reaction that is certainly not the norm.
Glad the article yesterday resonated with you. It's nice to know you aren't alone in going through this hard journey. We have each other to lean on.
I hope things get sorted out soon for you.
Big big hugs, Elizabeth (team member)
Thank you for the nice response
You are so welcome! -Elizabeth (team member)
