Starting Xeljanz

Rusty, I've read some of your posts & you previously mentioned some cramping & feeling like you needed to go to the bathroom & sometimes nothing happens or very little would come out. You said your dr gave you an antispasmodic but only allowed 1 pill a day. I suffered horribly with tenesmus & my gi allowed me up to 3 pills a day. Just a guess, why don't you try taking 1 before bedtime for a few days to see if this helps you, it certainly will not hurt.

Sorry you are suffering so much.

straydog said...
Rusty, I've read some of your posts & you previously mentioned some cramping & feeling like you needed to go to the bathroom & sometimes nothing happens or very little would come out. You said your dr gave you an antispasmodic but only allowed 1 pill a day. I suffered horribly with tenesmus & my gi allowed me up to 3 pills a day. Just a guess, why don't you try taking 1 before bedtime for a few days to see if this helps you, it certainly will not hurt.

Sorry you are suffering so much.

I went back through the forum and after doing some reading I am almost positive I have tenesmus. It’s not as bad as some people here have had it here in the past, but it’s still pretty rough. I’d say a 4 during the day and a 7 through the night.
Last night I took 1 extended release arthritis Tylenol before bed and I took a Bentyl around 5:30 pm and another one around 1 am. The cramping was less severe. So that was a great tip. The pain of the cramping was definitely not as bad last night.

What’s got me puzzled is the way it wakes me up almost every two or two and a half hours almost without fail for three straight nights, while I’m sleeping. It’s like there’s a timer in my gut in the night. It’s set to two hours. Weird.

I wake up. Feel the cramping. The urge to go. I go to the toilet. And at first a little shot of blood comes out in pieces. Sometimes that’s it. Sometimes if I continue to sit there and it will switch to loose all brown D.

Then when I wipe the toilet paper is bright red (medium amount) or bright red mixed with brown, with light mucus.

Then I go back to bed, and thankfully, even though I’m mild cramping at this point, I can go right back to sleep.

I’m taking prednisone 30 mg in the morning and my Xeljanz 10/10. I’m going to try and see my GI early this afternoon.
Bum rush him. He will usually see me. See what he thinks. Very frustrating.

In the other forum threads I have read through it seems that this is all inflammation related, so, I am guessing the prednisone will eventually help with this?

Maybe I need a suppository or an enema. I know one thing for sure…no mesalamine anything…I’m very allergic to that ingredient.

How did you get over your bout with this?

Post Edited (Rusty Barr) : 9/14/2021 6:14:08 AM (GMT-6)

Yesterday went great up until about 6 pm. No cramping. No D. No urgency. Wowsa.
I started to think wild and crazy thoughts, like Could I possibly be back in remission?

Spoiler alert.
Nope.

6 pm. I started with mild tenesmus again.
Then up in the night, I’d say medium tenesmus, up every two hours or so with the usual cramping, (cramping not as bad, but still strong), a little D and bright red blood on the toilet paper. Sigh. So exhausting.

I’m also taking Tylenol arthritis before bed. I took a bentyl 20 mg as well…I don’t think that is doing anything.

Took my Xeljanz 10 mg this morning and my prednisone 40 mg.

Today is the second day on the higher prednisone dose.

My little journal of late:
(Xeljanz 10/10 since 7/3/21)
8/20 - mild flare started
8/26 - flare now medium
9/1 - tenesmus starts
9/3 - start of Uceris 9 mg ER.
9/10 - last day of Uceris 9 mg ER. Not working.
9/10, 9/11, 9/12 and 9/13 - middle of the night tenesmus medium (severe at times)
9/11 - prednisone 20 mg
9/12 and 9/13 - prednisone 30 mg
9/14+ - prednisone 40 mg

Post Edited (Rusty Barr) : 9/15/2021 6:00:56 AM (GMT-6)

Well, I’ve got a GI appointment Monday. And I’m going to step down from 10/10 Xeljanz, tomorrow morning, to 5/5.

I’m doing this on my own decision…

I hope this is ok to do this? I’m not aware of having to taper down off Xeljanz 10/10 and I can just jump down to 5/5.

I would completely stop taking the Xeljanz tomorrow morning, but I think it’s best to discuss this with my GI, and not just go cold turkey off it on my own.

I’m just exhausted. I’ve been on the Xeljanz 10/10 (taking 10 mg morning and 10 mg at night) since July 3rd. I have been taking prednisone 40 mg (20 morning and 20 at night), since 9/14, (it’s the night of 9/24) and I’m still just miserable. Still what I would call medium flaring. Plus mild to medium tenesmus since early September. The Progress to get well, is just very very slow. And I’m so disappointed.

Still a lot of cramping off and on throughout the day. That sends me to the toilet. Then the cramping while going ON the toilet. Probably averaging about 6 trips to the toilet a day.
Poop or diarrhea is brown. But I often see some light red mixed on the toilet paper and some mucus.

Sometimes in the toilet after I get up from a cramp session of sitting on the toilet, all I see is just small pieces of brown and some red in the bottom of the bowl. Argh. It’s just not working. I’m beyond frustrated.

Tylenol has helped a lot with the cramping pain that comes and goes.

I believe the Xeljanz is holding me back from feeling better. I think if I drop down to 5/5 (5 mg in the morning, and 5 mg at night of the Xeljanz), starting tomorrow morning, and I stay on the prednisone, I’ll have a much better day starting tomorrow.

The reason why I think this, is because there was a time in the past when I wasn’t on ANY maintenance drug at all, and I started flaring, and within three of four days of the 40 mg of prednisone, just the prednisone, I started to feel a LOT better.

So, why would that not be happening now… I’ve got to believe it is the Xeljanz, right?

My system just does not “like” that drug.

When I see my GI Monday afternoon at my appointment I’m going to ask him about stopping the Xeljanz and starting remicade.

Thoughts? Comments?

All appreciated. Thankful for everyone here.

Post Edited (Rusty Barr) : 9/24/2021 7:10:41 PM (GMT-6)

The first time I used steroids it was like magic. Symptoms gone within a couple days. But the more I used steroids going in and out of flares, the slower it was to work. The last time I had to be on pred I was on 40 mg for 2 weeks with no relief, bumped up to 60 to see if I could avoid hospitalization for IV steroids and on 60mg the magic returned.

Xeljanz just might not be the right drug for you if you haven't seen any improvement at all and are just getting worse. I saw on your other thread that you were thinking about remicade and then some of the comments made you think it wouldn't work. Talk to your doc and see what he says.

I went down to 5 mg starting a few days ago. So far, so good. Fingers crossed.

Hope you're okay, Rusty.