Just saw my GI and he's recommending Xeljanz, but I'm scared

My husband was off of Entyvio for 6 months before he started Xeljanz, but I think that was just because he gave up on Entyvio, was exploring other options, and it took awhile to get approved for Xeljanz. Had to stop the 6MP before starting the Xeljanz, but there was no waiting period.

He was advised by GI to take the NEW shingles vaccine, but hasn't gotten around to it yet. Also is tested annually for TB. Has been advised to see a dermatologist annually for skin check. And gets bloodwork to check lipid levels every six months.

So far, all good. One month away from third anniversary on Xeljanz.

I have been on Xeljanz since Thanksgiving. Like you this was the "last resort" before surgery. I can tell you that initially I responded very well to Xeljanz. The only side effects for me is headaches.and I did get a cold sore ( which I have not had in like 10 years). I have been tapering off prednisone as well and when I got to 10 mgs it sort of threw me back in a flare but the flare was not as bad as when I was tapering without Xeljanz if that makes sense. I definitely think it is worth a try at this point. Good luck getting your insurance to approve it !

To the creator of this post, given that you are worried about tofacitinib treatment (as I am), it may be worthwhile to try welbutrin for a month or so and see if that helps you out. It would be off-label use, but many people with UC, including myself, have experienced real benefits from taking it.

Smithy

Hey Little Bear

In the interests of full disclosure, I'm going to describe the good and bad of my experiences with wellbutrin (and I am still experimenting with it). Obviously I'm not recommending you try what I do, and if you do decide to implement some or all of what I do, you should run it past your doctor first, as Wellbutrin can interfere with other medications, and there is a small but significant risk that wellbutrin can cause seizures if the dose is increased too quickly.

Ok, with that said, I have distal colitis. The symptoms aren't anywhere near as bad as many others here, but it's been really resistant to treatment. Oral mesalazine and prednisolone do very little for me, and the rectal meds are really difficult to retain for long enough. In an effort to stop myself having to take azathioprine, I decided about 2 months ago to test wellbutrin and see how it goes.

I am only able to obtain sustained release versions where I live, so initially that's what I used. I started on 300mg a day, divided into 2 doses. It seemed to take the edge off but nothing more than that. After about a month of trying that I increased the dose to 450 mg a day, divided into 3 doses. That did help quite significantly, I would get abdominal pain most days and that seemed to stop when I reached that dose. Most interestingly the beneficial effects seemed to be the most pronounced when I would take one dose too close to the other. Essentially, it seems like the Wellbutrin needs to reach a fairly high plasma concentration in order to treat UC - quite difficult to do with sustained release, which deliberately slows down the absorbtion. So, being stupid, I started cutting the tablets into quarters to compromise the coating and increase the surface area to accelerate absorbtion.

Now that really did seem to have the most noticeable effects, in fact most other people who deliberately treat their UC with wellbutrin use an immediate release formulation, so it's not overly suprising. One negative thing about wellbutrin however - because it needs to reach a fairly high plasma concentration in order to treat UC, it also means that it has a fairly short therapeutic window. During the daytime, when the next dose is never that far away, it's not really a problem as the levels keep getting replenished. During sleep, you're going 8 hours without dosing. So what I have noticed is that my colitis becomes cyclical - symptoms get better throughout the day but tends to be worst at the beginning of the day, when I've gone a long time without topping up. So, by itself, wellbutrin probably isn't going to be enough to push me into remission by itself. I'm about to add mezavant XL to try and treat it during the night, hopefully the combination will be enough.

I started Wellbutrin extended release last night..... hoping it helps. I'm still waiting on a 5 ASA from my GI. I'll post any changes to my symptoms if / when they occur.

Good luck!

We have to keep in mind that these meds have about a 50% success rate. Remicade says 60%, but there are a lot of people who live with symptoms to avoid changing meds and they are not in remission. It also seems like people who don't respond, often don't respond to anything. It's unfortunate but in my case, it was true. I am happy I had surgery though. I had enough of the fight. If 50% of people respond at varying degrees, it's 50% that do not. That's quite high.