Rinvoq side effects
Hi All,
I posted some similar questions awhile ago and thought I was over the hurdle with my side effects on Rinvoq, but I am not so sure now. I have been on Rinvoq for about 8 months. For the first 2 to 3 months I was getting side effects of fatigue, shakiness, naesua some acne and felt like I was getting a flushed feeling in my face with the rash from time to time. Most of the symptoms subsided around June, but in the last week they have all seemed to come back. All my UC issues have been really good, so with that area I am happy. Has anyone in the group been on Rinvoq and seen the side effects appear, disappear and then return. I can't think anything other then the meds could be causing the problem. I also tested for Covid and did not have it. If anyone has thoughts, I would love to hear them and would appreciate anything encouraging. Thank you
Hi
! I am not on Rinvoq, but I wanted to share my thoughts anyway. I hope that you get some answers from other folks who are also on Rinvoq.
I am not a medical professional, but these side effects do sound scary. Have you discussed them with the doctor? If not, I think that would be a good next step. Perhaps you can make a log of when you experience the symptoms in relation to when you take your medicine as well.
Let us know what your communications with the doctor have been, so we can continue to think about next steps! -Eshani (IBD Team Member)
Hi
. Did you ever take a break from treatment or reduce dosage to deal with the side effects? I ask because I did a little searching and could not find any research on or references to side effects subsiding but then returning with continuous usage. This, of course, doesn't mean this cannot happen and I am not a medical professional. As with any potential side effect, it is important to report and discuss these with your doctor. I'll also note that side effects reported to the FDA reporting system is how these events are learned about once the trial phase and approvals are finished. Hoping you can get some answers and relief soon. Best, Richard (Team Member) Hi Richard, Thanks for responding. I did talk to my Dr and they do not think it is the meds causing the side effects after such a prolonged period with no issues and no adjustments being done. The Dr kind of chalked it up to possibly being something viral as she said there is a lot going around. I also re-did a covid test and it was negative. She strongly suggested not changing meds yet as overall, my results have been outstanding for all my UC issues. She told me to give it the weekend and if I still feel lousy Monday, then maybe we will do blood work to make sure everything in that area is ok! I am assuming with you being a Team Member either you or someone you love has this disease. I guess sometimes the hard part is the inconsistency you get with having it. You can get a range of really good days and then for no reason you know about, you get a flare or some weird issues from being on a strong med! I guess things could be a lot worse. I will say this, I did move to a low gluten diet back about 5 months ago and I am not 100% sure it was the diet or the meds regulating, but 1 of the 2 or both have been a great combo. Thanks again for reaching out. Regards, Mark
Hi Mark (
). Sounds like there is a good plan in place to try to figure these symptoms out. I am quite familiar with the inconsistency/unpredictability of autoimmune conditions. My wife, Kelly, was diagnosed with a severe form of arthritic autoimmune condition at age two and has used a wheelchair since her teens. She was subsequently diagnosed with another autoimmune condition. Figuring out if symptoms are the disease, medication side effect, or something else entirely can be quite an experience. Most people have no idea just how systemic autoimmune conditions are. Glad to hear that the new combo has been working for you - sometimes you just have to roll with what works even if not sure exactly what it is. Best, Richard (Team Member)
I used to be on Rinvoq. It gave me fever and I felt badly on it. I stopped it after a couple of days and no more fever. My doc had me retry a smaller dose but I still had fever. I am now on Skyrizi and feeling great. Perhaps ask your doc to give you a smaller dose and see how you do? -Elizabeth (team member)
