Starting Xeljanz

Day 33 of Xeljanz 10/10.
(10 mg morning and night).

I wonder if it’s just going to kick in one day?

I’m still loose/watery 3 times a day on average.

In addition…
I also get 2 a day on average…“I’ve got to go” moments every day. Not urgency…but…
”ooh. I think I’ve got to go” moments. Only to sit down. And nothing. So. I get up. I’m not going to push.

I’m trying Konsyl psyllium 3 times a day now, trying to firm up from “loose or watery” to more “soft firm” or loose. It does seem to be helping, but not enough.

Sigh.

The best part about Xeljanz so far…by far…is…it is allowing me to sleep 8 hours through the night without going …every night!

I remember when I was first diagnosed in 2016 with UC, then I started on Humira…and…
It took 8 full weeks…and then …one day I woke up and was in full remission. (One or two normal firm movements a day. Every day. It was wonderful.) Sadly I went off Humira as it stopped working for me after 4 years.

So. Now. Xeljanz.

Has anyone heard of Xeljanz working the same way…That eventually…after so many weeks…it just kicks in?


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Post Edited (Rusty Barr) : 8/4/2021 9:25:46 AM (GMT-6)

I still can't tell if it's working for me or if I'm about to flare the longer I get off steroids. I've been off steroids 3 weeks now. I expected to be sicker than I am, but I don't really like living in "purgatory" of waiting and I'm sick of being in pain, even if it's "mild" pain. It's still unrelenting and wears on me. I'll be at 8 weeks on Xeljanz on Monday. I also have barely any appetite, which is kind of nice because I still have a lot of pred weight to lose.

My calpro is the same it was before starting Xeljanz 8 weeks ago -- around 500. And my CRP is elevated, which is hardly ever is even during flares. But my symptoms are mild and way better than before starting. So I have no idea what's going on. I've been off steroids for about a month now.

limey said...
Ive been on Xeljanz since March 2019 and have never looked back.
I don't go looking for bathrooms as I don't have urgencies as was once the case.
My second shot of Pfizer did upset me slightly but was no big deal.
Its unfortunate that we are not all the same and I guess I was one of the lucky ones.

Limey
Didn’t you say you take 10/5? 10 mg morning and 5 mg at night.

Can you walk me through how you got there?

Crampy pain. It's mild though and not constant. Like, right now I don't have any. Some days are worse than others. I was looking at surgery before this, and I definitely don't feel bad enough to get surgery right now. But my labs being so high isn't good either. I'm waiting to hear back from my GI with his recommendation. I'm guessing he will want to keep me on the higher dose at least for a while longer.

Rusty Barr and Sara14, I hope you have success with Xeljanz. I had to add Clipper in about a month ago because the Xeljanz wasn't working on its own. I'm waiting for a faecal calprotectin result to see if this combination has got me into remission, but sooner or later I'll have to come off the Clipper.

As I'm getting almost constant pain in my throat area, like my glands are slightly swollen, as well as a return of joint pain in my fingers, some neck pain, and that 'run over by a bus' feeling when I wake up I think I'll probably switch back to an anti-TNF (Vedolizumab) some time in September.

Simon1729 said...
UCyousee,

I get that feeling in my throat as well. For me it initially seems as if I'm gonna be developing a sore throat but later it seems more like a muscle or gland in my throat has become extremly tight and I feel it when I swallow on it. But it goes then after about 24 hours. Do you get similar?

Yes, that sounds similar to how it feels for me - a constant feeling that I have a slight sore throat / swollen glands. I'm pretty sure it's a side effect of the Xeljanz, but it could be the steroids, or just my immune system playing up after coming off Humira (I often felt like my glands were slightly swollen before I started on Humira).

Sara—sounds like you are moving in the right direction! At least you have been able to get off steroids without falling back into a flare so that’s a really good sign. Will keep my fingers crossed that the bad days become fewer! 🤞🤞😩

Today is day 47…coming up on 7 weeks of Xeljanz 10/10. (10 mg morning and then another 10 mg at night). My movements…Pretty much the same every day. I get up in the morning and within half an hour I have a pretty good looking soft stool movement, then about 2 hours later I have a combo/soft stool/loose movement. Then I’ll have another one or two of those type in the late afternoon/evening. Sometimes those late in the day moves are more loose/watery which I attribute to what I have had to eat earlier that day. No crazy urgency moments though which is great….Have not had one of those in a long time. But there are times some days when I am, say, driving and I feel an urgency coming on, it’s a lower crampy type feeling, then I’ll squeeze my butt for 30 seconds or so and it will go away. This happens maybe two or three times each week. Why on certain days I have no idea. Probably my diet that day or stress that day?

I had two days in a row last week (Thursday and Friday) where I thought I had entered complete remission…just one soft stool morning movement and that was it. But then Saturday I was back on the more standard routine as I described above. I’ve tried to figure out what was different those days and the only thing I can come up with is …there was no snacks between meals those days. Hmmm.

I have a follow up appointment with my GI on August 31st. Pretty sure he’ll check blood work.

So, overall right now, I’d have to say Xeljanz is a thumbs up.

I had IBS for probably 10 or 15 years years before (2016) I then went over the edge Into UC.
Major emotional family issue which I don’t want to get in to. But I am pretty sure that’s what caused the IBS to go into UC.

My days of late remind me of how I felt during those IBS years. Which I can definitely live with.

Two concerns coming up…what does the upcoming blood work look like…and also…coming down off of 10/10 to 10/5 (like limey posted above) or coming down to 5/5…what happens then?

Post Edited (Rusty Barr) : 8/18/2021 9:09:20 AM (GMT-6)

@ Rusty Barr, I did some digging around & found a post in June from suzy-q, she said it took 6 months for her husband to get into remission with Xeljanz. This may or may not be IBS, you are the better person to decide since you have dealt with it before. When you see you dr add this to your list of questions.

Take care.

I think I'm in remission (knock on wood)! I stll have to get labwork again in a week or two and see what that shows, but I feel like I'm in remission! I'm still on the higher dose but I don't really care anymore, lol.

Thank you!

That's great news Sara14! I hope it continues, and you dodge the surgery bullet at least for a few more years!