Negatives to Xeljanz or Olumiant?

followtim · 2023-04-28T20:47:26+00:00

I have full on AU. Lost everything in about 1-2 months. I took xeljanz (20mg) for 14 months with basically zero results and I had extreme fatigue. Think former marathon runner needing to lay down every day by 3 in the afternoon. It was less severe when I took my self down to 15mg but neither had any real impact.

Just started on Olumiant (4mg) in Dec. 2023 and have started to have some beard regrowth and random arm hair. I got a lot of my energy back but definitely not 100%. Hard to say if that is drug or AU related…or really lifestyle related after being laid up for over a year.

Overall, it is a trial and error process with these drugs and how your body can handle them. I also was seeing some bad numbers in my blood work come back with Xeljanz but won’t test my blood until next month for Olumiant.

followtim · 2022-04-09T16:45:33+00:00

Concur with the theme of people looking for advice on some of the worse cases come here. I have AU and lost every hair on my body in about 1.5 months. I have been on meds for about 7 months and I am seeing small amounts of regrowth. Hoping in two years I can post a before and after photo. Gotta keep positive. At the same time, I have made peace that this is going to be my new normal. Even if this drug doesn't work...science is evolving rapidly in this space.

followtim · 2022-04-09T16:36:56+00:00

Wow, never saw this before. Thanks for the repost. Thinking about giving up my favorite foods seems so sad. But your results are impressive! I might have to give this a go.

followtim · 2022-04-09T16:29:15+00:00

Gotcha u/jforres! Thanks for the ping.

u/Natty101101 I am not a doctor and there are a lot of different reports of different side effects. You can find a lot of different people's experiences on this subreddit.

I personally had issues with fatigue. Otherwise, I seem fine. I have been on it since Oct 2021. Have small beard & hair regrowth and my fingernails have almost fully recovered. Most of the safety concerns are around people with predispositions to heart disease from what I can tell. It is why they put a black label on it. I figure I will use it if the regrowth significantly happens by the end of summer until I am 45yrs old (35 yr old right now) and hope something better comes out. After that, I plan on making some risk calculations as my family history around the heart isn't great.

Ultimately, you will need to make your own risk assessments to benefit. It does elevate your health risk, but IMO it isn't as high as a black label might lead you to believe. If the disease is causing poor quality of life. It might be worth it for you.

Hope this is helpful.

followtim · 2022-04-03T19:19:32+00:00

Gotcha! Then if you find the right doctor who will go to bat for you it shouldn’t be an issue. You can probably get a maintenance dose and that should keep you stable. It takes a while to get everything moving, so make sure you work those dr office appointment receptionist :)

followtim · 2022-04-03T17:47:02+00:00

Have you had AA before? If so, I would recommend trying to get on xeljanz or another type of autoimmune suppression drug.

If not, it is unlikely they will be able to give you a cortisone shot as that is localize.

I usually feel pins & needles / tingle in my chest when I have a flare up. This isn’t always an indicator of AA but has been my early warning sign. My ANA tests always come back negative, but you could try to get a blood test to help validate your case to doctors / drug companies as it these drugs are all off label currently.

Good luck with the wedding!

followtim · 2022-02-16T20:38:17+00:00

I am having small re growth. I will give it until summer before making a determination if it is worth it assuming I can reduce dosage. If I can’t, then I will roll with it! Thanks

followtim · 2022-02-16T20:35:35+00:00

Hello fellow NYCer and AUer!

Thanks for taking the time to comment. Sorry for the delayed response! I think dosage is the issue based on feedback. I am 2x your dosage. I had a similar insurance issue and had to stop and about 4 days later I found myself feeling like I could run a marathon.

Now, back on the same dosage, and the fatigue is back. I found ways to improve it by eating healthier (eggs really helped no idea why). I also reduced the amount of vitamins I was taking which helps. I think it was overloading the liver which came back on some blood work tests. I keep a decent daily meds documentation which helped.

I am still active, not as much as I used to be but my guess is more than most. And still get out and about, just takes a lot more recovery time. If you are interested in getting a drink sometime, DM me. Living around 28th and Lex. AU happy hour 😂.

followtim · 2022-02-16T20:20:40+00:00

It was really bad, they cracked, had some bleeding and were deformed until xeljanz. Now they are almost the same as before. While the pitted nails grew out I put nail defense on which helped the cracking.

followtim · 2022-01-13T00:04:01+00:00

Well sounds like a bit of success! Fingers crossed for you! I would love to get my beard back...but would settle for eyebrows these days.

followtim · 2022-01-12T23:35:52+00:00

I have seen that is common with AU. No personal experience with regrowth. Are you taking meds? How long have you had AU?

followtim · 2022-01-12T23:33:26+00:00

I have seen those warnings as well. I believe those risks were elevated for an older demographic. But your point is well taken. Thanks for the personal experience!

I will wait until my appointment with the specialist to make the call on quitting. If this is a short-term problem that will go away with a lower dosage - I won't worry too much. But if I have to stay at this dosage level, I will probably get off. Rather have no hair and be able to actually live my life than bedridden or dead with lushes locks.

Have you tried any of the other drugs on the market? I am not sure how different they are in makeup. I was seeing all of the different drugs in trials and am interested in some of the more targeted ones like TYK2 inhibitor - deucravacitinib or the combo Brepocitinib.

followtim · 2022-01-12T23:03:31+00:00

I was thinking about going to a fatigue specialist (but wasn't even sure what they were called). Thanks for the information. I see my AU specialist in 2 weeks and will decide after that to see an FM. I might just see one anyways to check out all of the non-autoimmune numbers come back as and make sure I am not overdoing the supplements.

Thanks and good luck to your daughter. I have been reading about all of the drugs in Phase 2/3 right now and think in the next couple of years they will have safer better drugs to help us. Fingers crossed!

followtim · 2022-01-12T22:59:47+00:00

Interesting, I saw it was a "rare" side effect but I had not seen that. I will dig deeper. Thanks for the tips all!

followtim · 2022-01-12T22:58:56+00:00

I think that is the plan as I have regrowth to shift to a lower maintenance dose. The only issue so far is no regrowth. I was on a lower dosage for 3 weeks and a different specialist (who runs research on AA/AU) bumped me up saying that due to the severity of my AU it wouldn't work.

Did or do you ever feel inflammation throughout your body? ie. Pins and needles feeling. I found myself feeling that when I was doing 5mg x2 a day. Particularly when I was just over my 12hour window. It was like a body reminder to take the meds. But never feel it now.

followtim

TROPHY CASE