Rinvoq Approved and Now Nervous

Are you currently pretty ill?? I have only gone on biologics (and now Rinvoq) because my disease is so severe. I doubt that I would have tried them when it was more mild but that is just me. How is your quality of life? If your life revolves around your UC and the bathroom then I would just give it a shot. If not then ask if you can just imuran or 6mp first. Obviously having uncontrolled inflammation for a long time is really bad for your whole body so you have to do something. I am really new to Rinvoq (started April 3) but my main side effects were chest heaviness/tightness/shortness of breath and severe lethargy at the beginning. This probably went on the first 3-4 weeks but then my body got used to it. All my cholesterol numbers jumped up at least 100 points within a month which is pretty scary but hopefully they go back down since I am at 30 mg now. And yeah the acne is very bad but I am also on prednisone so it could be that too. I have never had such bad acne before so that could be a side effect. That is what I have noticed so far though but I have been pretty sick a lot of the time I was on it. I do not know yet if I can be on it alone without prednisone but will find it out very soon. Are you in a bad flare right now??

I'm on another similar medicine, Xeljanz. I have had no side effects whatsoever and haven't been sick once since before the pandemic. You can get all vaccines that aren't "live" vaccines. I've gotten vaccines for covid, flu, pneumonia, shingles, and soon will be getting a tdap (tentanus) booster. I find the advice above strange because 6mp and Imuran have A LOT worse side effect profiles than Rinvoq. And her side effects aren't the norm at all.

I don't think imuran/6mp is any safer than rinvoq. It doesn't have the blood clot warnings but is a stronger immunosuppressant than rinvoq and it also has cancer risks. If it's given before biologics that's usually because of cost issues and because it is an older drug then the side effect profile is well known, than because it is less harmful.

I have been on xeljanz which is from the same family of drugs as rinvoq for 4.5 years and have no side effects that I know of. Certainly no acne issues and I'm prone to acne. I often get acne after eating sugary foods like watermelon or fruit smoothies or cakes with a lot of syrup. Of course i am a sample size of 1 and other people will respond differently.... when I started it I had severe inflammation in my rectum (rest of the colon was ok). It impacted my quality of life because of the urgency- needing to run to the toilet especially in the mornings and late evening. It's hard when you have to go to work, go shopping, teach a class and suddenly need to find a toilet.

The point with UC is that noone wants to take these drugs, but if your symptoms make life miserable then you end up choosing to take a risk that something bad might happen re drug side effects, or exist but have a low or no quality of life. Also, untreated inflammation can escalate into something more serious where you eventually need stronger drugs with even more risks, so sometimes it's better to nip things in the bud.

Re vaccinations- it's not recommended to take live vaccines on immunosuppressants. Other vaccines are safe but they may be less effective due to a suppressed immune response. Note that measles vaccine is live as is yellow fever... so if you think you need either of those then make sure you take them before starting any immunosuppressant.

It's good to make sure you're up to date on regular vaccines like tetanus, diphtheria etc before or after starting rinvoq. Also yearly flu vaccines are recommended, as is pneumonia (i think the latter is usually done as a series of two). I collect vaccines so have had some extras 😆.

I went from 20 years on Imuran to Remicade to Rinvoq. Imuran can become very dangerous over time especially with skin cancers. Remicade almost killed me, my entire body went into allergic reaction. Rinvoq has been great after 1 year. No side effects at all, its worked very quickly to get things under control. I was told by my doc that the "blackbox" warning is for the entire class of these drugs, not specifically for Rinvoq and there have been no instances of blood clots for Rinvoq, I hope that is still true. Also, you can stop Rinvoq anytime because of infection or just to take a break and restart without issue.. I'm still wondering about side effects but excellent so far.
best of luck!

Post Edited (beatUC) : 6/16/2023 2:30:18 PM (GMT-8)

Thanks for all the replies - you have all helped relieve my anxiety. Did any of you notice major weight gain while on Rinvoq? That's something I'd like to avoid as well (if possible).

Some good info I found on a doctor website concerning Rinvoq:
"Hearing about possible side effects may make you hesitant to try a new medication. If you feel this way, here’s what you should know about possible side effects:
Some of the side effects that you see listed for a particular JAK inhibitor did not occur in the safety studies run for that JAK inhibitor. If that seems confusing, you’re right.
Here’s what happened. When a side effect occurred in a study for one type of JAK inhibitor, the FDA required that side effect to be listed on all JAK inhibitors that work in a similar way."
"A JAK inhibitor interferes with signals in the body that are thought to cause inflammation. This, in turn, reduces the inflammation that fuels diseases like eczema, psoriatic arthritis, and vitiligo." and of course UC.

Hope this helps, I learned a lot and feel pretty confident with this class of drug.

Took me 3.5 weeks to get in solid full remission with Xeljanz which is same class of drugs as Rinvoq. I was hospitalised with a severe flare and Pred/IV wasn’t getting me better, but Xeljanz finally turned me slowly. Similar to you i improved, but was still seeing some watery stools along with solid. The last 7 days i have now seen complete normal bowl movement, 2 x day and full solids and no UC symptoms anymore so I’m finally in remission.

Beatuc that makes sense! I believe entyvio has a black box warning about PML for the same reason, even though no cases have been found caused by it. If my memory serves me correctly

For me at 3 days I was having no blood and solid stools. It truly was/is a miracle drug for me. But I also think that since I started Rinvoq while Humira was still in my body, I was basically doing combination therapy: anti-TNF and JAK inhibitor. I think Hugo is doing Rinvoq with Stelara and is the only thing that has kept him in consistent remission.

Prof. Brian Feagan has said that the future for IBD is combination therapy of biologics and "smaller" drugs (like JAK inhibitor pills). However, (he didn't say this, I am) insurance companies are probably not going to want to go in that direction.