The paralyzing terror of feeling ... well?

Just about 3 weeks into Xeljanz and it seems to be doing something — I’ve had less blood (most days I have no blood). But the gastro side effects have been worse than the UC. For the past 2 weeks I’ve gone from averaging 7-8 bathroom trips, right back to 15. And it’s liquid and cramping and altogether different from my flare issues.

When I discussed this with my doctor, she agreed that I could try gradually adding Metamucil to see if that will counteract the Xeljanz. I’ve taken 1TB with dinner for the past 4 night and slept through 3/4 nights. So this AM, after two nightmare bathroom sprints, I added 1TB to see if it would help during the day.

Long story short, I have not run to the bathroom at all since the early AM issues and as a result am struck with a raging terror that I must be working on a bowel obstruction.

While I know this is always a non-zero possibility, I also recognize that, rationally, feeling OK (I’ve had some cramping and gas, still) does not mean something is wrong. But I suppose I’ve grown so accustomed to feeling miserable that being suddenly functional for part of one day is highly abnormal and, therefore, suspicious.

I know if I can get some consistency and predictability I will get over this fear, but tips for dealing in the interim are welcome.

... Cause I assume I’m not the only one.

I know what you mean. Over time I have learned to not focus as much on the one day. I will have a good day or two that is followed by more difficulty quite often. I hope things even out for you!

@landcruiser I’m sorry you’re also dealing with this—it is definitely worse than the UC. I’m losing about 5lbs/week and haven’t left the house, other than to walk the dogs, in 2 weeks. The pain is the worst — at least with all my UC issues the pain was tolerable. This is just misery. And I have no appetite. No real nausea, just no desire to eat anything.

After 2 days of PM Metamucil I did have one bathroom trip with actual, formed stool. So I am hoping that if I can work up to taking it with every meal it might more consistently mitigate the Xeljanz D.

I also saw one woman post in a Xeljanz support group on FB that she had the same issues until she started taking it with food. So I’m going to try that, as well. I’ve been taking first thing in the morning (~1 hour before breakfast) and at bedtime (~4 hours after dinner). I’ll just take it with each meal from here on.

When I talked to my doctor she was concerned but not panicky. She said she doesn’t have many patients on it, so she can’t really say if I should expect it to subside. I am desperately hoping that it will taper on it’s own, or that I can maybe offset it with fiber. I’m going to give it another week and see if there’s any improvement. If not, I’m going to have to stop taking it, cause I don’t have many more -5lb weeks in me. Im already feeling pretty weak, and I was at a healthy weight to start.

Please let me know if you hear anything, or if you try anything that works!

Post Edited (Celeriac) : 12/23/2018 5:58:23 AM (GMT-7)

I’m on the 10mg. Dropping to 5 is a good idea—if I can’t get this to stop st 10 I will definitely talk to my doctor about that before ditching altogether.

I do think it’s having an effect, which makes this even worse: it’s the first thing to seem like it’s helping since March. It’s be great to find a work-around.

Make sure you are taking enough water along with the Metamucil.

@celeriac amazing difference yesterday. I had peanut butter toast before taking the 5mg dose. No nausea or D. Had a little bit of gas around 4pm, but thats it. Ate dinner, took my 5mg dose before bed. Awoke this morning to no pain and a solid bowel movement no blood. Hope this helps. I am hopeful and feeling much better. Thank you for the advice from the FB discussion. I will keep you updated.

@celeriac I do not want to jinx myself but this seems to have been the right combination. 5mg working well twice a day with food. Big xmas dinner last night and this morning, no issues so far. Solid movement after one cup of coffee no blood. Hope your doing better.

@celeriac how are you doing the last few days?

Stay on the rowasa until you are done the pred...and afterward......really, do that.

Maybe once you stop comparing UC to a gastro virus...it will start sinking in. UC is forever.....
q

Ive read the thread initially....but this time, only from last seen post. Therefore ass-uming the taper was pred. Apologies.

Could you explain why tapering xeljanz....because of the side effects? You have more patience than I would ever.

Were you tapering the rowasa because of side effects as well?

I get the comparison....

q

quincy said...
Ive read the thread initially....but this time, only from last seen post. Therefore ass-uming the taper was pred. Apologies.

Could you explain why tapering xeljanz....because of the side effects? You have more patience than I would ever.

Were you tapering the rowasa because of side effects as well?

I get the comparison....

q

It’s not really a taper, per se. The Xeljanz dosing for UC is 10mg 2x/day for an induction period, after which you either stay at that dosing for maintenance, or you step down to 5mg 2x/day. It’s possible that I could curb/tolerate the side effects at the lower maintenance dose. Since it seems like the Xeljanz is helping the UC, I’m willing to hold on a little bit longer (limited by the weight I’m losing weekly) before stepping down if it gives me a better shot at maintaining on the lower dose.

I’m trying to step back the Rowasa because I have ridiculous cramping with the Xeljanz and I’m running to the bathroom shortly after using it (because I’m running to the bathroom pretty much constantly). Using the Rowasa makes me more aware of the cramping, and when I use it I end up taking longer to fall asleep, and I wake more frequently during the night. Since the blood has all but gone away, I was hoping I could taper back on the Rowasa in an attempt to get more sleep/experience less pain.

My typical UC flare “pain” is more of an intense, gripping discomfort. Since about 1 week into the Xeljanz that changed to stabbing cramps— and urgency no longer defined by rectal inflammation but by the cramping pain. Xeljanz feels just like the crappiest GI virus I’ve ever had.

@celeriac the 5mg dose has done wonders for me instead of the not tolerated 10mg dose. If you read the literature closely, the difference between response on the two doses is very small. The dose for Arthritis patients is only 5mg as well. I have no idea but perhaps there was some need to up the dose for requirements for FDA approval. Anyway, please try to contact your doctor to see if you can try the lower dose. Especially if you feel that it may be helping with Inflammation. Hoping 2019 brings you relief.

@ celeriac hoping you see an improvement in how you are feeling