Starting Xeljanz

Hi Sarah

I’ll report on my UC later.

But I want to tell you you can go to YouTube and find stretching exercises for your periformis muscles. I’m probably spelling that wrong. But I struggled with what I thought was lower back pain and siatica nerve pain down my legs at times for years. Mine is caused by all the driving I do for my job.

After a lot of physical therapy. I finally figured out I need to stretch my periformis muscles daily.

I’ve been doing that for years now.

Whammo. No more lower back pain. No more sciatic nerve pain.

Hallelujah

Ok. Update on Xeljanz. I am on day 12. My GI started me out with 5 mg in morning and night.

Urgency gone. 3 or 4 loose/watery moves a day…Spread out…morning to bedtime. about half the nights so far I have made it through the night without having to get up to do diarrhea. I’m counting those nights in the updated report here when I say 3 or 4. No blood.

So. So far…as far as my opinion…Xeljanz has been wonderful.
Prior to Xeljanz. While figuring out the Humira wasn’t working for me any more, it was about 3 months of 7 to 10 moves a day with a LOT of sprints to the toilet. Urgency crazy. Almost afraid to leave my house.
It would just come on me like a wild fire. So. To be “urgency free” now? Hallelujah.

I did question my GI as to why he started me out on 5/5 and not 10/10.
And the answer is pretty much is what I expected. I’m paraphrasing…”switching you from 4 years of Humira…and I thought we would start slow with the Xeljanz….and see how you responded to a new biological drug. If things don’t tighten up by the end of next week. And you’re still doing well in terms of side effects I’ll move you to 10/10. I also had some concern if I started you on 10/10 that might be overpowering and I would would badly constipate you”.

He is also very aware of my allergic reactions to many drugs my whole life. Not related to UC. I’m sure this factored in.

One other note. Not that this is a side effect. But you’ve got to be aware of it. I’m 58. Male. 6 feet tall. 215 several months ago. “Big boned” my mother used to say. A good weight for me…when I feel I am at my best …is 200 or 205.
I think the Xeljanz has increased my appetite. I know I’ve been snacking more of late. I got on the scale this morning and I was 223. Ruh Roh. Starting a diet today. My metabolism still works well. Weight watchers type of diet works best for me. Low fat.

I’m not on prednisone now, but when I take that, I know for SURE my appetite greatly increases.
I think Xeljanz doesn’t make me as continually hungry as prednisone. But it does have an impact on me in that department for sure.
So, I would say if you start Xeljanz. Just be aware of this. I know many with UC struggle with keeping weight on. That’s never been a problem for me. I love to eat.

Post Edited (Rusty Barr) : 6/24/2021 10:36:21 AM (GMT-6)

Yeah, I had the same thought as Flowers regarding your increased appetite. I am the same as you, Rusty, in that I gain quite a bit of weight on steroids. And I never seem to lose weight with my UC. Unfortunately, I am starting to gain back what I worked to lose over the past year. Oh well, maybe if I get surgery, I will finally get back to my normal weight! Glad you are still doing pretty well! No urgency is huge.

Wow, that's awesome. I'm on day 12. I'll go down to 10 mg pred soon. I'm already having mucous again though so I don't think Xeljanz is doing anything for me.

3-4 BMs would be great for me, lol. But I definitely understand you want to do better than that if you can! Good luck!

I feel like Xeljanz is working. Just not all the way.
Yesterday I only went twice, once in the morning, once at night….but both times loose and watery. This morning I’ve already gone three times. This morning the feeling is as if I am not finished…and thus…three times…pretty much back to back to back.

So. I heard from my GI yesterday and he’s going to up me to the standard induction of 10/10. I’ve been taking 5 mg morning and night since I started.

As far as blood work? I have an appointment to see him next week. My guess is he will check blood work then.
I pretty much have been seeing him every 4 to 6 weeks of late. He may hold off on blood work until the following visit. To see what Xeljanz is doing. He might want to see me on 10/10 and then do bloodwork. Who knows?

I'm on week 7 now with Xeljanz and had blood tests done today, including another cholesterol test. I'm staying on 10 mg twice a day at the end of week 8 because although I've had some improvement I'm not in remission (still going 4 to 7 times a day, and sometimes more). I'll give Xeljanz a good try, but I've already started the discussion about switching to Vedolizumab / Entyvio.

I really want to be one of those patients that responds well to Xeljanz but it's not looking good right now.

Good luck to all of you. I hope you get a good response!

Sara — I don’t know about the jaw tightness, but feeling out of sorts and lightheadedness could be related to prednisone taper. My husband was on prednisone for a long time and had lots of issues close to the end of the taper. He ended up having to go back up on prednisone and taper much much more slowly — worked with an endocrinologist on that. (It took a year to fully get off of steroids). The endocrinologist also worked with him on therapy for the prednisone-induced osteoporosis (which is now improved to osteopenia). I realize it is a lot of moving parts , and as awful as prednisone is, you may want to bump it up a little and see if that helps with the other symptoms, and then taper down much more slowly. In our experience, many GIs do NOT understand the challenge of the steroid taper especially for long term users.

I went up to 10 mg morning and 10 mg night on Saturday. It’s Tuesday morning now.
Yesterday I had only one movement…first thing in the morning and it was loose/watery. Once yesterday afternoon and once last night I thought I had to go…went to toilet…but just gas.
This morning, had a movement first thing…again…watery/loose.

Praying I firm up soon. Maybe I need to radically adjust my diet to get there.

That's good to hear, Rusty. I'm still not quite off steroids so I'm not sure yet if it's helping me. I'm at week 3.5 of Xeljanz. I'll update once I'm fully off steroids soon. I'm back on Uceris. I'm not really sure why my GI told me to go from pred back to Uceris. I guess because I told him I had diarrhea one day. It only happened that one day though. I'm only about twice a day, but that's my normal on steroids. Sometimes mine are a bit looser, but I don't care if that's the only symptom.

14 BMs is a lot and calpro of 600 is still a lot. You have more patience I guess than I do (or perhaps a lot less pain...because I can be in severe pain, stuck in the bathroom 12 hours a day and have a calpro of 500...).

I stopped steroids 3 days ago. I now have mild left-sided pain, and quiet a bit of gas tonight with I think some mucous...felt like mucousy farts...good times! I've been on Xeljanz 4.5 weeks so far. That weird jaw pain I was getting seems to have mostly gone away for now.

How often are you all getting bloodwork while on Xeljanz? My GI had me get bloodwork after 2 weeks, but hasn't said when I should get it thereafter.

Just a quick update.
I started 10 mg morning and night on Saturday July 3, 2021.

Right now it’s the morning of the 17th.

Overall, I am very happy with Xeljanz. Not perfect. But. A lot better than I was.

A typical day is one or two movements. Both lose or watery.

Other than that…no side effects that I know of. No urgency. No blood.

Hoping one day soon, the loose/watery goes to soft stools or firm.

My doctor said we will go eight weeks of 10/10 before looking at blood work.

UCyousee: Sounds like a good plan. As long as you aren't suffering much. I also had some skipped areas during my last 2 scopes.

Rusty: That is great it's working so well for you. I am still really not sure, but I have been off all steroids for about 8 or 9 days now, and I am not in a full-blown flare yet or bleeding at all like I expected to happen by now. I don't feel normal either though. I feel like I'm on the verge of going back into a full-blown flare. On Remicade, when I was in remission for a whopping 9 weeks, I felt completely normal. I will see how I feel over the next week and monitor if I get worse or not. Right now I'm having 2-4 BMs a day with very mild crampy pain at times.