Xeljanz Update

Hey all. Wanted to give an update if anyone was interested.
So after a long long long process of trying to get xeljanz figured out through insurance I finally began this past Friday. I'm doing 10 mg in the morning and 10 at night. I'm also currently on 25 mg of Prednisone and some treatment for latent tb.

Anyway quick overview of the past is that I've been in a flare for almost 2 years now. I've tried humira, azathioprine, and entyvio all of which failed. So now we are to xeljanz I am going on five days in and honestly I have felt a little bit of progress in these first few days. I had been going anywhere from 8-15 times a day depending on what instead and how much I ate the day before while I was mainly low fiber lately. Never formed, a lot of mucus and blood on occasion. These last two days I'm still not having much form to stools but seems like a lot less mucus and blood less often. Urgency is definitely still there but the number of times has greatly reduced. I actually slept through most of the night and I have only gone 4 times so far today and it's nearly time to get ready for bed! I've never been so excited, as in addition I got brave and was honestly extremely hungry so I ate a little more adventurous than I had in the past.
I know it's extremely early in the process and it takes a while to fully work and if this disease has taught me anything it's that things can change so drastically from day to day so I'm not going to get my hopes up too too much but it has honestly given me a much more hopeful attitude towards one day hopefully achieving remission. I just thought I'd share with you all as I am feeling extremely helpful and dreaming about what it would be like to start being me again! I'll keep you all updated with any progress I may have if you're interested!!

Stay positive, maybe those are early signs Xeljanz might work for you. I'd give it a while longer just to make sure!

Great news! Entyvio did work for me and I also felt changes right away and just had this feeling it was going to work for me. Sounds like that's what's happening with you and xeljanz! Good luck and may you soon see remission moving closer and closer. It can still take some time with lots of ups and downs. Look for gradual changes (like you're seeing already) that will ebb and wane for a while.

Thank you for all the well wishes guys! It really does mean a lot. You're absolutely right notsosickly z I actually haven't felt any positive feelings toward this disease for years it seems like. Thank you Suzy, that is so exciting to hear! I sure hope I can follow that same path and time frame that hour husband did

There's been some success stories with xeljanz, here's suzy-q's story as an example:
/www.healingwell.com/community/default.aspx?f=38&m=3600816&p=2

bvollbre said...
Hi all,
First time poster here. Earlier this year I tried Remicade, but ultimately did not respond to it.
My GI here in San Francisco just prescribed Xeljanz. As of 7/3, I am taking 10mg of Xeljanz twice a day. I am also taking 40 mg/day of Prednisone to keep things in check in the meantime. Dr. said they would like me to start tapering the Prednisone after 2 weeks on Xeljanz, and that I should see some improvements around the 2-3 week mark, if it's going to work.

Today is Day 5, and no noticeable changes yet, but it has only been a few days.

Otherwise, looks like j pouch surgery might be the last option, so I am also mentally preparing for that. Curious to hear more about others' experience with "the 'Janz" as I like to call it!

Hi & welcome! I wish you good luck with xeljanz. I didn't try it myself so I can't provide any personal experience with xeljanz.

iPoop posted suzyq's story above, her husband has had fantastic results with xeljanz. I had surgery, and my story is in my signature if you're interested in reading about that, but there are a few more surgery stories in the resources thread on the forum main page, and also tons of people's experiences if you look on google. Xeljanz is pretty new so we do not have a ton of information here in using it as treatment for UC.

Step 2 and 3 are on the 2nd page. I thought i updated since then, but it just goes up to being reconnected. Since, I have been doing well. It's been almost 3 years... It's weird to say you wish you had done it sooner. I mean, I wish I never had UC at all. In reality though, I do wish I hadn't given up so much time and money only to end up having surgery. I might as well have done it sooner and lived those years without so much struggling. I guess since i ended up having surgery, I might as well have done it sooner, but if i had fought and avoided surgery, I wouldn't feel that way, I'd feel thankful that I avoided it. There are definitely some benefits to life after surgery. I never take medication, I can work full-time again, I can eat/drink whatever I want without worrying about it causing a flare up, I don't spend money on doctors, procedures or drugs, I will never get colon cancer, I don't need to worry about flare ups getting in the way of my plans, I can travel without carrying drugs.

Well, today marks 7 weeks on Xeljanz, and no signs of improvement. Just got home from an appointment with my GI, and it looks like J-pouch surgery is likely my next step.

We are going to try 6 weeks of Entyvio in the meantime while I get all the insurance, consultations, CT scans, etc. done pre-surgery, but my Dr. says the chances of responding to it are pretty low, since I did not respond to Remicade previously. Just thought I would post an update here, hope others have better luck with Xeljanz than I did!