Generic Name: Xeljanz for Ulcerative Colitis (tofacitinib)
"Xeljanz has been a miracle drug for me. Finally, after almost two years of horrible pain, severe diarrhea, etc., I have a life again. I have tried so many pills, enemas, suppositories, biologics, and everything failed me. The reason I rated it a 9 instead of 10 is because I still have an occasional day that I’m not doing well, but I was in pain and had diarrhea EVERY DAY 20 plus times a day before Xeljanz. I never thought I would be so excited to say I finally have solid stool. Xeljanz started to work for me within two weeks and is still working to this day. I have been on it for four months. I highly recommend this medicine."
"Have only been taking the 10 mg twice a day for the last 5 days. Yesterday, my bathroom frequency went down from around 12-15 times a day to just 2 trips yesterday! Most amazing response I could have hoped for! Only bad part is the morning nausea I'm experiencing."
"I’ve been on Xeljanz now for almost four months. I was diagnosed with UC about 3 years ago, and I’ve been in an almost constant flare since then, with no medication or steroids able to keep it in check. After 3 weeks on Xeljanz, I genuinely feel like a new person, my symptoms are almost entirely gone, and my energy levels improved substantially. I hadn’t been able to exercise outside without fear of being ‘caught’ for years, and that has all totally changed now. I’ve been on 10 mg twice a day, and I’m about to drop that down to 5 mg twice a day."
"After initial success with my first biologic, remicade, I had a year of remission. My UC came back full force but since I had stopped the remicade, my blood tests showed I antibodied to remicade. Then Humira-fail, Entyvio-fail, injecting 3 vials of sandostatin a day- fail. Then I got my entire colon/rectum removed and a Jpouch in late 2014. Since the surgery I’ve suffered severely with Pouchitis and Cuffitis. Ugh! So as soon as Xeljanz was available and reviewed by my doc he asked if I’d try it. I started in January. Now it’s 9 months later and I can finally say I have some real quality of life back!!! I never thought I’d get here. It took about 4-6 months of 5mg twice a day. Xeljanz giving me some life quality back! I’ve had some weird viruses so I’m staying on 5mg. Hoping for more positive post-release data!"
"life saver for me since I started using it 2 years ago, it took a few weeks to a month to finally get me under control but once that happened It has been really good. I was very sick and now in remission. I only hope it stays this way. Just remember that it took a year and a half on prednisone and other drugs to keep me somewhat healthy and that it only took this a month and a half to get me back to where I could leave the house and not be scared."
"I've had a huge flare of Ulcerative Colitis for 2 years now. Used very different types of medicines. After using infliximab for half a year (which didn't help at all) I ended up in the hospital for a dexamethasone infusion for a few days. After taking prednisone for several months, I started on xeljanz 2 x 10 mg. I have to say, my UC is improving every day! No more blood in my stool within a month, but my stool is still a bit restless with gas, sometimes diarrhea and mucus. It takes a while for it to work properly the experts say (because the colon was so damaged). But it has already improved from going to the toilet 30 times a day to sleeping 5 times and nights! After 3 months on 2x10mg, I will soon be on 5mg twice daily. The only side effect is that you gain (a little) weight and also get tired (but that is a side effect of all these types of medicines). Bottom Line: The best-acting drug for my UC so far."
"I had a flare of ulcerative colitis due to life stress. Was bleeding again. Xeljanz @ a dose of 10mg x day, it took 3 days to start getting no blood in stool. Quite amazing. I do have an ear infection though that I got from my small daughter so I'm taking precaution. Will follow up in a few months."
"I was diagnosed with ulcerative colitis (UC) in 2012 after losing 20 lbs and going to the restroom a lot. I was extremely dehydrated. After I got out of hospital I was put this is on Asacol and predisone. I finally got into remission. After that time I started smoking cigarettes. I was in remission for 5 years without any medication. I decided to stop smoking and it thru me into a HUGE flare up with multiple BMs and blood. I tried Humira and that made things worse, Imuran gave me pancreatitis, Entyvio worked for a month, then stopped working. I started Xeljanz last year with 10 mgs twice daily. It was working well and then my doctor lowered my dose to 10 mg a day. I have been in a flare up since. However he put me on prednisone and it helped but it's tapering off and so my flare up is coming back. Other than Remnicade, I'm not sure what my other options are now?"
"Was diagnosed with UC 2012, that was after 2 years of trying to self diagnose myself. Been on so many different meds. I've been on this medication for about 3 months 10mg 2 times a daily and I have to say it's been a ride. I was going to the bathroom a lot. Now I'm not going at all. Every week I have to take laxatives because I'm not going to the bathroom at all. It's causing weight gain. I'm extremely tired now as well. I can't keep my eyes open. I was driving my husband and I home and was almost in an accident as it hit me all of a sudden. Pulled over so he could drive but imagine what is would be like if I was alone. I'm so uncomfortable and the nausea and headache are unbearable. I work from home so it helps to step away from the computer but I'll say my symptoms on the meds aren't getting me anywhere I need to be."
"I have Ulcerative Colitis and started Xeljanz last February for the bad joint pain that often accompanies Colitis. It worked almost instantly and my joints felt great. Unfortunately I developed 6 severe infections in under 4 months so I had to stop the Xeljanz. My joint pain is back so today my Rheumatologist started me back on Xeljanz at a half dosage. I was off it for 6 weeks and did not get one new infection."
"I have been taking Xeljanz for UC for around 2 years now, nothing was working except for the prednisone, and that was killing me. This is the only drug I have taken that has worked. I do have some side effects but this is a miracle for me. 10 mg a day."
"Xeljanz was a miracle drug for me. 31 years old and I had UC for about 2 years and had tried numerous biologics with no success. The only thing that would put me into remission was high dosage steroids which I had been on for 2 years and had caused adrenal insufficiency for me. I was in the process of consulting with a gastro surgeon to have a J-pouch placed when my GI had me try Xeljanz and after about 6 weeks I went into complete remission. I take 10mg twice daily and have had 0 side effects after 8 months. This drug gave me my life back ."
"Pre-medication condition: Ulcerative colitis always active at rectal level. No way to get rid of it; I tried Vedolizumab, Infliximab and Azathioprine and also combined therapies. With Xeljanz: I started Xeljanz one month ago and UC now is completely gone. I am surprised because I never completely reached mucosal healing without corticosteroids. Actually I haven’t experienced any side effect, but we will continue to monitor my condition"
"Using Xeljanz for UC 10 mg 2x a day about 4 months. Good results right away within days. Fatigue in the beginning slowly getting better. Weight gain, but not sure if I can blame the drug. Some nausea in the morning. I now know what foods to avoid. Four months in and no real bad side affects"
"I’ve been taking Xeljanz for just over a year. I’ve been through all the other biologic meds since I was diagnosed 12 years ago. Stelara was the last one I tried and it didn’t work AT ALL. My fecal calprotecten was over 8,000 when I started Xeljanz and after 3 months it was down to 22, which I think is the best it’s ever been. So Xeljanz is definitely working. The downside to that are the side effects. It started with fatigue and headaches for the first month or so, then progressed to stomach pain, burning, loss of appetite, nausea and diarrhea. I thought maybe it wasn’t working and I was flaring again, but my calprotecten was even lower than before. I’ve also developed high cholesterol and high blood pressure (never had that before in my life). It’s making me feel absolutely horrible, I have all the flare symptoms without the flare! Now I have to decide if I should keep taking it or not, I don’t have many options left :("
"I started on Xeljanz when it was a trial medicine. It worked within 2 weeks of starting the trial. I had tried lots and lots of other meds, and none worked. This is the only medicine that has worked for me. I have had zero side effects from it so far. It's been at least 5 years since I have been on it. UC is a distant memory for me now. Although it is very expensive, which I think is a rip-off, but at least my insurance company pays most of the cost."
"I have been taking Xeljanz for my ulcerative colitis for 2 month now, it stops the blood but still having diarrhea around 6 to 8 times a day."
"I have a very bad time before with my UC, I used all medicines , but when I start Xeljanz 5mg twice a day, my whole life changed, I feel very well, and thanks to xeljanz."
"the medication Xeljanz did not help my UC at all. My colon inflammation remained the same and actually increased recently."
"I have had Colitis for over 5 years. I have tried quite a few other drugs and then I tried Xeljanz Worst drug I have have taken. Put me in the hospital for 6 days. Be careful"
"Went into remission in two weeks. It also helped my arthritis. Pill form, no injections needed."
Xeljanz XR
