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Rinvoq Day 21: The Good and the ... annoying

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Ulcerative Colitis
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tonito
Regular Member
Joined : Jul 2011
Posts : 64
Posted 5/19/2022 2:40 PM (GMT -8)
Hi friends, Just thought I'd give an update for those who are interested in Rinvoq (Xeljanz is the sister medicine).

The Good: The medicine works fast! This is day 21 without prednisone. Stools well formed, no blood, no urgency, 1-2 bm's per day. I'll be honest: I could live like this for a long time and not complain! As far as labs, my CRP is -1, which is amazing. All labs for liver, kidneys, iron, etc. are all looking very good.

The Annoying: Fatigue is improving, but sometimes it's still there, esp. for the first few hours after taking the pill. Still struggling with excessive urination--but tests for UTI's are negative. Folliculitis in my back, that look like acne: doctor prescribed antibiotic cream that should take care of them. In terms of lab, white blood cells are a little low and cholesterol has also gone up. This was expected. No issues with clots. Interestingly, my doctor told me that the one case with Xeljanz that led to a clot was from someone who had had an infection in their leg and was on a transatlantic flight! He said it was a joke that they had to add that to as black box warning. But the FDA is super careful, much more so than European equivalents.

Conclusion so far: It's still very early (21 days!), but I am staying on the medicine. My doctor is pretty confident that when I go down to the maintenance dose of 30 mg (in 35 days)., most if not all side effects will go away, including the lab work.

I should add that I still take the mesalamine supps. and enemas. They definitely also help.

Also, Rinvoq just had very good results in Crohn's trials phase 3. My doctor believes that Rinvoq is going to start dominating the field of IBD.

Happy to answer any questions for those of you considering Rinvoq. May I ask those on Xeljanz/Rinvoq how they are doing?
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1962
Posted 5/20/2022 6:42 AM (GMT -8)

tonito said...
But the FDA is super careful, much more so than European equivalents.


I am in Europe. Our regulatory bodies are super careful too! Only we don't have "black box warnings" full stop. Just lists of side effects and their frequency. When I started to flare a couple of years ago on xeljanz, my GI was saving increasing my xeljanz dose as a last resort if nothing else worked, because of the blood clot issue, which they are taking very seriously. Managed to fix it with enemas at the time.

Answer to your other question. I am doing fine, now 3.5 years on xeljanz. But need to check my calprotectin as I've been having more abdominal pain than usual, which can sometimes be the start of a flare (or sometimes nothing).

I have terrible fatigue but I think that was the case before I started xeljanz.

Happy to hear you are mostly still doing great. It would be nice to see comparative studies of xeljanz and rinvoq, I guess that will take a while.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 5/20/2022 9:41 AM (GMT -8)
That's great to hear. Also interesting about the blood clot thing. I'm nearing a year on Xeljanz, still in remission. No side effects for me.
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