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Ulcerative Colitis
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Posted 10/11/2022 3:48 PM (GMT 0)
Hi….
I am suffering very badly with my UC.. Had it for over 35 years!
Been on every Biologic.. Remicade, Entyvio,
Humira, Stelara.. which caused me to lose 75 of my sight in my left eye.
Not much left..
Dr. put me on Xeljanz. very frightened to start
it due to horrible side effects..nausea, headache, diarrhea, could get blood clots, high cholesterol, fast heart beat .. which I have already. Can’t go on so sick..Been on Prednisone for 35 years.. destroyed my bones.. on 25 mg.. .. it is doing nothing..
Please does anyone have anything to say about Xeljanz?
I am desperate!
Posted 10/11/2022 6:01 PM (GMT 0)
I’m sure others will chime in, but until then—Sara was ready to get surgery after also trying every biologic. And then she went on xeljanz and is in remission. I don’t believe she has any side effects.

As far as the listed side effects of medications—just remember that they have to list all POSSIBLE side effects and most people don’t experience any of them. I know reading side effects scare the heck out of me so most of the time I try not to. Even reading possible side effects of a common antibiotic will almost throw me into a panic attack.
Posted 10/11/2022 6:14 PM (GMT 0)
Thank you so much for answering back so quickly… I guess I will bite the bullet and start it… the only other option is a colectomy.. which is totally life changing.. The only thing that scares me is that from Stelara… I lost 75% of my vision in my left eye.. not listed as a side effect…
Posted 10/11/2022 6:18 PM (GMT 0)
Wow. That’s awful about your vision! I know someone who had what they called a “stroke I her eye” and lost her vision from that. Basically a blood clot I guess. Was it something like that?

Sara will probably pop in at some point and tell her story. I think it’s been about a year now since she started it, so you might find her posts farther back on a search.
Posted 10/11/2022 6:30 PM (GMT 0)
Went to the Best Neuro- Ophthalmologists.. in New York City ! They all said I have Optic Neuritis.They wanted to be sure I didn’t have Multiple Scleroses. Had a Spinal Tsp.. that really hurt.. had temporal lobe biopsies.. on the sides of my head .. also painful.. Both negative.. They did alot of research .. can get uveitis it says can be a side effect of Stelara.. the optic nerve is right next to it! Mine is almost all damaged.. nothing to fix it! I am learning basically how to live with only being able to see out of one eye ! That is why I am so frightened about Xeljanz!
Posted 10/11/2022 7:08 PM (GMT 0)
So sorry to read about your situation. I can tell you we do have members on Xeljanz that are doing very well & in remission. One member suzy-q, her husband started it during the trials & when it was approved their insurance approved him continuing using it. He has been in remission about 6 years now.

I don't recall anyone having this issue with Stelara in this forum or the crohns forum. So sorry this happened to you. I'm assuming you have expressed all of your concerns with your gastroenterologist? What did he have to say about this knowing your history?
Posted 10/13/2022 10:51 AM (GMT 0)
I have been in remission on xeljanz for 3.5 years, minus a couple of minor blips which i managed with 5ASAs. Nothing else put me in remission and I was about to have surgery when xeljanz decided to work. We knew it was definitely working by the 7th week, but had some small indications before that.
Posted 10/13/2022 7:02 PM (GMT 0)
I started Xeljanz in May after flaring on and off for about a year when Entyvio stopped working for me.
Drugs began working so fast! I remember it was about 1.5 - 2 weeks after starting Xeljanz and I was drinking coffee on a walk through the woods at 8:30 in the morning (previously was afraid to leave my house before 1 pm).
Unfortunately, Xeljanz did elevate my cholesterol quite a bit. I'm hoping it's not too serious and I'll be able to stay on Xeljanz. I read that the cholesterol elevation was dose-dependent and reversible, so if my repeat labs are bad I plan to ask my doctor about reducing to 5 mg twice a day instead of 10 mg twice a day, but I'm not sure yet.
Posted 10/15/2022 3:09 AM (GMT 0)
Yes, Flowers is correct! Xeljanz has had me in remission for a little over a year now. No side effects. My boyfriend is also on it and has been in remission on it for nearly 3 years. Definitely recommend trying it. It took 9 weeks on it until I was completely symptom-free.
Posted 10/15/2022 9:04 PM (GMT 0)
I have been on Xeljanz since March of 2019 and for me its been the best thing since sliced bread.
I started working for me after 2 days and has been fine ever since.
I do keep to a strict diet as many on the forum do.
I cannot comment on side affects as I have never had a headache in my life, I guess Im lucky that way.
Posted 10/16/2022 1:06 AM (GMT 0)
Husband has been on it 6-/2 years, in full remission. Only side effect was slightly elevated cholesterol which has gone down as he has lowered his dosage. He was in 20mg/day for over 5 years and slowly tapering down to 10/day. You will know in a few weeks whether it is working. It was a game changer. Good luck
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