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Xeljanz experience w/ UC

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Ulcerative Colitis
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Posted 5/29/2017 1:01 AM (GMT 0)
Hi all,

I just started Xeljanz 5 days ago as a last-ditch effort to treat my UC before I take the plunge and have surgery. I've tried every possible drug/treatment out there and Xeljanz is my last, best hope.

I saw a couple other posts re: Xeljanz that sounded promising. I'm just curious about the details of taking the medication (e.g. how long did it take to start working?; how did you know it was working?; any side effects?; etc.).

If anyone else out there is taking or has taken Xeljanz, I'd love to know more about your experience with it.

Thanks in advance!

-b
Posted 5/29/2017 9:59 AM (GMT 0)
My husband has been on Xeljanz a little over a year (see previous postings). He was ready for surgery too. He will say that within a two weeks he could tell it was working -- just in terms of feeling different and symptoms slightly improving. The initial trials looked for remission 8 weeks in. Definitely within 8 weeks he had major improvements. Colonoscopy 4 months in showed complete remission.

No obvious side effects. He has developed neuropathy in his feet since starting on the Xeljanz and is still very slowly tapering off of prednisone. Neurologist doesn't think the neuropathy is related to the UC.

He takes 10 mg in the morning and 10 mg in the evening.
Posted 5/30/2017 12:09 AM (GMT 0)
suzy-q,

So glad to hear that your husband is doing so well with Xeljanz. I hope they're able to figure out the neuropathy.

Thank you so much for the info about his experience achieving remission with Xeljanz. There isn't much info out there yet other than what's been reported in the clinical trials, so I don't really know what to expect. They've got me on 5mg twice daily. Not sure if that's just because of my insurance or if there's a medical reason for it. Seems like the 10mg twice daily dose was slightly more effective in the trials. Need to ask my doc about that one.

Thanks again!
Posted 5/31/2017 9:57 PM (GMT 0)
If you are not getting a response fairly soon then you may want to go up to 20 mg (if your insurance approved 10, they will approve 20). Our prescribing doc is at Johns Hopkins. We have had to get insurance approval twice now. Each time they approve a lower amount and doc had to go back to get it up to 20.

I hope this works for you.
Posted 8/10/2017 5:37 PM (GMT 0)
Hi brettus - Curious how the Xeljanz turned out for you a few months later. Your story sounds very similar to mine. (Xeljanz will be attempt #4 at a maintenance drug.) Insurance denied initial request so we are appealing and I feel good about it but there is a big part of me that just wants to pull the rip chord and schedule surgery. Just wondering how it turned out for you. Hopefully well!
Posted 8/10/2017 6:25 PM (GMT 0)
Sbrown -- good luck getting the Xeljanz approved. I think it takes two appeals.

My husband actually had surgery scheduled because things were so bad. I am pleased to report after 15+ months on Xeljanz he is still in total remission. It is our miracle drug.
Posted 8/10/2017 6:43 PM (GMT 0)
Hi Sbrown,

Unfortunately, Xeljanz had no effect on my UC :-( I gave it 12 weeks but there was no improvement. However, from what my rheumatologist says, I'm in the minority. So, there's definitely no reason to lose any hope over it not working for me.

Ironically, I'm sitting in the waiting room of my rheumatologist's office waiting to get my 1st infusion of Simponi Aria. It's the only medication left that I haven't tried. If this one doesn't work out, it's colectomy time for me. Fingers crossed that it works!

I wish you the best of luck. Feel free to ask me any other questions you might have.

-b
Posted 8/10/2017 7:02 PM (GMT 0)
Brettus --

Did you try Stelara? It's still in trials for UC but our GI had seen some very positive responses with that. We figure if the Xeljanz stops we will try that next.

I hope the Simponi does the trick. Everybody has such different luck with all the different meds. At least you will feel that you have tried everything before going the surgical route.

Good luck.
Posted 8/10/2017 7:07 PM (GMT 0)
Sorry to hear that Brettus! Sounds like you are at piece with whatever the final outcome is - as am I. Be well and thank you for the quick response!

brettus said...
Hi Sbrown,

Unfortunately, Xeljanz had no effect on my UC :-( I gave it 12 weeks but there was no improvement. However, from what my rheumatologist says, I'm in the minority. So, there's definitely no reason to lose any hope over it not working for me.

Ironically, I'm sitting in the waiting room of my rheumatologist's office waiting to get my 1st infusion of Simponi Aria. It's the only medication left that I haven't tried. If this one doesn't work out, it's colectomy time for me. Fingers crossed that it works!

I wish you the best of luck. Feel free to ask me any other questions you might have.

-b

Posted 8/10/2017 7:24 PM (GMT 0)
Sbrown,

Thanks for the kind words. I'm definitely trying to be at peace with whatever happens at this point. It has been nearly a year of hell for me, so I'm ready to feel better at nearly any cost. However, I'd be lying if I didn't tell you that I'm terrified of having surgery. That's why I've spent the last year trying every single medical option available (or even those not available like Xeljanz and now Simponi Aria). I just know I'd never forgive myself if I didn't try every possible treatment before having the surgery.

That said, I know there are tons of people out there who have had the IPAA (J-pouch) procedure and most of them say it was life-changing and they wish they'd done it sooner.

So, at this point, I'm doing my best to just accept that I have a chronic illness with no "cure" other than surgery and to be grateful that there is an end in sight unlike most other chronic illnesses (even if it's potentially a somewhat scary one).

Keep me posted on how the Xeljanz works out for you. I'll be rooting for ya!

-b
Posted 8/10/2017 7:31 PM (GMT 0)
Suzy,

Thanks for asking me about Stelara. Unfortunately, Stelara didn't work for me, either. I gave it 16 weeks (before I tried Xeljanz) and it had no effect. I've also failed Remicade, Humira, and Entyvio as well as all the 5-ASAs and other immunomodulators. Unless there's something I'm unaware of, I think Simponi is the only medication left that I've not tried.

I'm so glad your husband is doing well on Xeljanz. What a miracle!

All my best,
b
Posted 8/10/2017 7:50 PM (GMT 0)
I hear ya, B. My doctor had me meet with the surgeon after failing Remi and Entyvio, just before I started started Humira (also a fail). (Not because he was advocating surgery but because he wanted me to be comfortable with the option and to ensure it didn't sneak up on my when I was less prepared.) At the time, I was very anti but I've since been assigned a J-pouch mentor through the hospital (I'm lucky to be at UofC in Chicago - great resources) and that plus the advent of social media has brought me a lot more comfort. Surgery (in my opinion) is my last fail safe so like you, I feel like i owe it to myself to try all of the therapies I can before I exercise it. I'm also not keen on signing up for more downtime after being sick for two years. I'll keep you posted on how the Xeljanz goes, if and when I get access. I'm hopeful! Thanks for the encouragement
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