XELJANZ® (tofacitinib) for the Treatment of Moderately to Severely Active Ulcerative Colitis
On May 30th, 2018, the Pfizer corporation, announced that the Food and Drug Administration (FDA) has approved its application to allow for Xeljanz to be used by ulcerative colitis patients who meet certain criteria.
There are some more details listed on the Pfizer website about this new medicinal product of theirs. You can read the full press release here: https://press.pfizer.com/press-release/pfizer-announces-us-fda-approves-xeljanz-tofacitinib-treatment-moderately-severely-act
What would be excellent is for the current and future UC’ers of the world who have experience with Xeljanz (Tofacitinib) to start including their reviews of this on this page, both reviews of how it went, and as well any potential side effects.
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I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
Has anyone taken 6-MP for UC? It had not been approved by the FDA for the use for UC. It is used for leukemia.
I was taking 6 MP for 8 years for UC. I stopped taking it about 10 years ago because it is a medicine to treat leukemia…and also because I needed to always get blood work done to check my white blood cell count. I am currently in remission.I have had UC for at least 34 years.
I took it for about 6 years. It worked ok. Reducing my flares to about one a year. I have mild to moderate UC.
I had no side effects. It seemed to stop working after 6 years so dr took me off and put me on Apriso.
I have been on Apriso for at least 10 years. No side effects. One flare a year. Seems that’s what most meds do for me but it’s better than being flared all the time.
Yes! I was taking 6mp. I actually stopped 10 days ago to start Xeljanz. Took my first pill this morning. I was on 6mp for a while and also was doing IV Entyvio for a year when all my symptoms came back. I have severe UC.
how is everyone’s diet? What are your triggers? I’m to the point of not eating. Seems like everything I eat has a trigger.
Starting Zelganz in a few days. In the middle of my worst flare ever. So I’m currently on 60 mg of prednisone and asacol. I have tried entivyo w/o much response and recently remicade. I responded during the loading doses and 1 post loading dose. I couldn’t make it the full 8 weeks. Unfortunately my health insurance, BCBS, doesn’t allow remicade dose increase or increase in frequency so off to try Zelganz I go.
This time I’m also beginning a gluten free and no-low sulfite diet.
Any other people try this yet? Not excited about the laundry list of side effects.
My GI is recommending that I try Xeljanz since Entyvio is no longer reducing inflammation. I also am not excited about the laundry list and the high out of pocket cost for this very expensive drug since my insurance minimally covers it. Have you had positive results since you started it in January?
Hi SBeckham, did you know they have Xelsource which assists with the high cost of Xeljanz?Here is the link: https://www.pfizerpro.com/product/xeljanz/ra/support/xelsource-patient-access
Hi sbeckham!
I pay nothing for Xeljanz. My dr did all the paperwork for me. I wasn’t approved a few times and my dr appealed it. Finally was approved! So far so good on it! I’m going to start seeing a nutritionist. Still unsure what I can eat. I take 2 pills a day. I drive a school bus so I get very nervous about eating. I don’t want to have to stop to go! I was taking a few Imodium at a time. He put me on Motofen but it makes me drowsy. I was also on entyvio but after a year of it, it stopped working. It seems with all meds they stop after a year. I hope it works for you!
Thank you! I’ve been doing really well on the Humira weekly & azithiaprine combo. Officially of off prednisone.
I’m not really noticing any side effects, occasional fatigue but I’m always tired lol .
Unfortunately I didn’t respond to Xeljanz, but I used their savings program so I didn’t pay anything out of pocket.
If it’s on your insurance inquire scout the savings plan. If it’s not on your insurance, ask your GI for samples. That way you’ll know if it works before you pay out of pocket.
Actually I am responding very well and absolutely no side effects. I started xelganz on a prednisone bridge, and I’m still titrating off of the prednisone. Down to 10mg and still doing well, which means the xelganz is doing the heavy lifting.
There is a manufacturer coupon for xelganz- it buys down your co-pay, go to the website. Also ALL the GI’s have samples- so you can try it before you buy it.
I do like the ease of a pill vs: scheduling an infusion.
My GI is monitoring me closely though, labs every two weeks, my luekocytes are still a little low, but you can’t have it all lol!
FYI…I responded better to remicade then entyvio, so maybe you can try that first if it’s covered by your insurance?
Best wishes!
1 week on zeljanz – i tried remicade then entivio thenn simponi failed on all 3 – was on 60mg prednisone and tapering down at 40mg now – so far i am starting to be able to get through most of night without waking for bm mornings still bad but i have my hopes up with zeljanz – 10mg twice per day – “ wether or not the glass is 1/2 empty or 1/2 full – I can always refill it”
Zeljanz starting to do the trick after 3 weeks – less urgency my inflammation markers went from 10.4 to 0.9 – normal range is 0-4.9 – bloodwork levels all good i also have tried to cut out as much sugar and red meats as I can – i am taking 10mg twice per day and a tapered dose of prednisone started at 60 mg down to 20 currently and will stay on 10mg for next 2 months –
Well here’s my update, unfortunately despite incredibly high hopes I haven’t responded adequately to the Xelganz either, ugh.
Colonoscopy showed disease all throughout my colon with patches alternating between Mayo score moderate or severe.
So prednisone supplementation was reinstated.
NOW, my gastroenterologist wants to start me on humira and imuran (says that helps humira work better). I’m honestly paralyzed with fear. He basically said we are in colon preservation mode right now, and we need to be aggressive to reduce the chances of progressing to surgery.
I’ve done asacol, multiple types of enemas, Entyvio &
Remicade.
I’m afraid of humira- dr thinks I’ll respond well because it’s so similar to remicade.
I’m just finding myself in the dark place of denial, I just don’t want to see if I have alopecia, weight gain, injection site reactions etc.
Am I just being a baby? I know denial isn’t doing me any favors… sigh
I’m 44, incredibly active- a trail runner, was a marathoner but the prednisone started causing stress fractures, a mom of 2nkifs & 2 dogs, a wife and I work full time. I enjoy being busy & active. Since I can’t run as much, I’ll bike, hike or swim…almost 5-6 days/week.
Humira hasn’t been as scary as I originally thought it would be. The only side effect I really get anymore is fatigue the day of and the day after the injection, but it’s not so bad that I can’t do a little bit-i just can’t plan any long days. Good luck!
I have now failed on zeljanz amd jad to battle insurance to try stelara – hotnit approved under “medical necessity” due to fact its not approved for uc yet – had my first dose- infusion last week still on 15mg prednisone – lets see how it goes failed on remicade, zeljanz, simponi, and entvio – hope this one works
Brian – I hope you are doing well. Did Stelara work for you? It’s not listed on the site with reviews so I’m trying to find out as much as I can about it. I have failed Remicade & Entyvio and have to decide on a few meds.
Still on stelara once every 4 weeks plus added 6mp to the mix. That seems to be the trick. Doing well on them – although you need to monitor bloodwork every 2 weeks and I get iron infusions every once in a while. I feel like i have my freedom to go and do whatever without worrying where the next bathroom is