• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Any experience with Rinvoq

I have been having Crohn’s for 16 years now. The first 9 years, my disease on colonoscopy and pathology was very mild, though the pain was very unbearable for me, so I was not eligible for biologics. In 2016, I developed my first perianal fistula and was put on Remicade every 4 weeks. It turned out to be a life saver and could heal the fistula after 3 years. So, the time between doses was spaced out for every 8 weeks and I stayed ok and not in remission until I developed an allergic reaction to Remicade last November. I tried it again in January but the reaction was severer. Accordingly, I was switched to Stelara in February 2023. Though I was taking it every 4 weeks, there was no response. I started to have severer abdominal pain than before, developed a perianal abscess which was confirmed after a month to be another perianal fistula, started to lose blood and became anemic and had to take iron infusions and my inflammatory markers were all messed up. As a result, my GI decided to put me on Rinvoq. I took my first single dose (45 mg) on August 16th and the loading dose will last for 3 months. Haven’t seen any improvements yet. I know it’s too early. On the other hand, I developed a side effect not listed by the company; namely, vertigo. I feel very dizzy all the time. My GI prescribed Stugeron which I have to take twice per day and the Rinvoq dose has been shifted to be one single dose before bedtime. I still have vertigo. I saw an ENT doctor and he recommended I should bear up with the dizziness until it wears off. What is your experience with Rinvoq and when did it kick in? My GI asked me how are things going on and I said as is: there is still pain in the TI, I have diarrhea, my fistula is acting up and my rectum is sore all the time. I read that Rinvoq acts quickly with UC patients and not CD patients.
 
I have taken it for the last 2 weeks on the starting dose. I have a bad muscle ache. I went to the gym last week and my arms still hurt, and it usually takes 1 day to recover. I also feel slight discomfort in my chest. I am going to email my healthcare representative to mention these to her.
 
Top