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Coincidence, or just wishful thinking? (Xeljanz update; considering surgery)

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Ulcerative Colitis
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Posted 6/11/2019 4:16 PM (GMT 0)
A little anecdotal, but curious to know what some might think.

Background: My husband has been on xeljanz for just a little over 6-weeks, and only progressively gotten worse to the point he’s getting dizzy spells, barely sleeping, going upwards 20x just blood, and a new symptom of nausea. Needless to say, he’s one of the non-responsive types on any of the other previous treatments so xeljanz is the last try.

So, last night as we were having the talk to prepare our lives for him to go into surgery by the end of the week, one of the reminders went off on our amazon Alexa to take his xeljanz pills. He says, “guess I don’t need to bother taking those anymore”. So he didn’t. His GI wants him on prednisone, but DH isn’t having it with those anymore.

Here’s the thing, today (one day after no more pills), he’s gone only a handful of times by midday and all other previous symptoms are either gone or much less severe. Sure he still has blood, but I can only make some assumptions about xeljanz .

Assumptions: xeljanz is the culprit for the rapid decline and increase in UC symptoms. Did stopping it give the guy a break or is it just an eye of the storm?

Curious to know other opinions as I know xeljanz has otherwise been a miracle for so many others!

A cautious warning: It’s never a good idea to just stop taking medication without talking to your doctor. I can’t help to warn/preface to be careful with these strong medications.

Post Edited (lopomme) : 6/12/2019 5:18:43 AM (GMT-6)

Posted 6/11/2019 4:27 PM (GMT 0)
With one data point it is hard to say. I'd say skip another day and see what happens. Side effects of xeljanz within the single digits (3-4%, and slightly above placebo): diarrhea, nausea, headache, among others:

https://www.rxlist.com/xeljanz-drug.htm#side_effects
Posted 6/11/2019 5:12 PM (GMT 0)
Not sure if it's coincidence but if he is going for surgery i would have thought the less immunosuppressed the better so stopping the pills could help with that. Celeriac had a very extreme reaction to xeljanz including vomiting - you might be able to dig up her thread on that. Seem to remember someone else alleviated side effects by reducing from the 10mg pills to the 5mg ones.
Posted 6/11/2019 5:16 PM (GMT 0)
Thanks! I wasn’t sure if they were side effects since within the first four weeks he wasn’t bad, it’s only been since the 5+ week mark he’s gone downhill.

If he continues to show improvement, we will post pone the surgery for a few more days, at least, as we need all the time we can get to align kid watching and what not. Phew!
Posted 6/11/2019 8:06 PM (GMT 0)
Sorry to hear about the reaction to Xeljanz that your husband has, I guess it shows just how different we all are and how we react to medications..
For myself I can't say enough about how good Xeljanz has been for me.
Posted 6/11/2019 10:57 PM (GMT 0)
I know I’m on the sidelines to UC, so I can’t ever know just how you all feel with it. It’s nice to know others are getting relief, and I’m glad he was willing to try pretty well everything out there. I appreciate this forum letting me bounce off ideas and leverage all of the information I could to help DH. I hope our story has helped others too along the way.

We are setting our sights to go to the hospital Thursday this week via emergency to get admitted in as “emergency surgery”. He’s done fighting and mentally prepared to get the surgery... something he wasn’t ready for a few months ago, and I feel that is very important in being able to take these next steps.
Posted 6/12/2019 12:54 AM (GMT 0)
Best of luck. I personally wouldn't stop the surgery process because of a good day, or a good week... We all have ups and downs. I remember before surgery I had a break from symptoms and I was very close to putting on the brakes, but I didn't, and shortly after things got tough again leading up to the big day. By the time the day came, I was SOOOO thankful I stayed strong and faced my fears. Years later, I am appreciative of the life I've been able to live since surgery. I've done so many things that wouldn't have been possible with active UC (and mine was constantly active). I missed out on so much and I have so many regrets for letting UC take a good chunk of my 20s and 30s. The worst of it all, is knowing that if I had the surgery sooner, I would have been able to see my friends and family more. I missed so many weddings and holidays, lost friends, broke ties with family... I didn't want to use my health as an excuse, but had I done something sooner, things would probably be different. Why emergency? This is a complex procedure, it's really best to use the BEST. Someone who has done 100s or 1000s of pouches, not whoever is around.
Posted 6/12/2019 1:21 AM (GMT 0)
The week before my surgery I had a couple of really good days. I was still begging for surgery — I had felt so bad for so long that I just wanted it over with; UC defeated me.

I’m so much happier with a jpouch than with my diseased colon. Good luck to you and your husband. I felt so much better after I woke up from Colectomy, my colon was no longer poisoning me from the inside.
Posted 6/12/2019 1:27 AM (GMT 0)
Xeljanz landed me in the hospital with severe dehydration due to 40+ trips to the bathroom, daily, for 3 days. It took another 3-4 day of not taking it before things started to regulate. I was so, so sick. I think my husband honestly worried I was dying. It was ridiculous.

After 2 weeks off the Xeljanz I felt much better (down to like 20 bathroom trips) and so tried going back on at a half dose. Immediately got violently ill again.

My doctor talked to the rep and said it’s rare, but extreme diarrhea does happen. We also thought I was headed to surgery.

I started Remicade in January and am much better.

Post Edited (Celeriac) : 6/11/2019 7:30:56 PM (GMT-6)

Posted 6/12/2019 11:14 AM (GMT 0)
NSSG - so glad you chimed in tbh. I just finished reading your post from 2018 about the surgery process and all of the nitty details. It was really insightful.

I think we are nervous about the surgery partly due to the fact he’s had such bad or no reactions to all previous meds and diets, so nervous he’s going to be that small percentage where the pouch won’t work long term either.

As for the surgeon, if he goes in as emergency, it’s just to circumvent the system. We have to get admitted to the hospital via that route otherwise he’s on a waiting list. he actually can request the surgeon he’s already has consultations with even though it’s going through the “emergency” surgery route. She’s top notch from what I’ve read. He said if she’s not available, he’ll wait until she is.

Slight problem for us, she’s a die-hard Toronto Raptors fan, and with their recent loss, he needs her in a good mood 😄 jk

I appreciate the testimonies from you both, Keith and NSSG, to persevere through this milder time and get it done. We tried to go swimming last night, and one minute in, DH had to jump back out. Our 3-yr old was sad since she was waiting all day to “play with daddy in the pool”. That stuff is heart breaking.... for both of them.

I know I’m treading on thin water posting in the UC thread about surgery, but thanks so much.
Posted 6/12/2019 11:17 AM (GMT 0)
Celeriac - I’m so happy to hear you’re doing better! That’s so scary. I know what your husband was feeling for sure!! That’s how I’ve been watching mine on the sidelines.

We also tried remicade prior to xeljanz and he had a reaction to that too. That was terrible. He had flu like symptoms and was on the ground shaking, cold and couldn’t get warm. I think that was actually just as scary. I was throwing hot blankets from the dryer on him until I could get his mom over for our kids to take him to the hospital. Hopefully remicade doesn’t hit you like it did him.
Posted 6/12/2019 2:09 PM (GMT 0)
That sounds like a good plan, using a surgeon you feel good about while making it emergency. I think with my insurance plan there was some financial benefit of doing it as emergency but I am a planned person in general, so I couldn't really wrap my head around it. On the positive, I don't think his experiences in the past are an indicator of what's to come if he does have surgery. For example, Keith has issues with pouchitis and he had a good response to biologics... I had an awful response to biologics and I do not have issues with pouchitis. I was literally laid-up with pain and debilitating symptoms from Remicade. None of the drugs worked well for me, and I was very severely flaring. The only drug that worked really well was prednisone and I wasn't willing to take that any longer. I also had a high pANCA, which is good for differentiation of IBD, but not so great for pouch outcome and I am okay. Surgery is a difficult pill to swallow, but with 4 little ones, it is something that will give him the ability to do the things he wants - the pool story is so dead-on with my life before surgery. I was always stopping to go to the bathroom, and I would be stuck in there indefinitely. Now, I go more, but I am in and out in under 2 minutes. Hopefully, he gets a long and much-needed break from UC, but if not, surgery can give him his life back.
Posted 6/12/2019 3:17 PM (GMT 0)
Hello I have been on Xeljanz for just over 3 weeks. I too am experiencing worsening symptoms. Stool quality seems to be improving but bleeding is getting progressively worse! I was moved to Xeljanz due to lack of response to infliximab but right now I’m feeling like infliximab was maintaining my symptoms far better than this!

I’ve been told to increase by prednisolone back to 40mg and hope that works whilst I wait to see if I respond to the xeljanz. After reading this I’m wondering if I’m fact its the Xeljanz that is making my symptoms worse. I haven’t had a full nights sleep for over a week due to being woken up numourous time just to pass blood. No stool just bleeding!

I’m at the point now where I can’t pass wind without bleeding.

Not really sure what I am saying here but wanted to share my story.

I signed up just to share my experience. My gastro team are still hopeful that it will work for me and all I can do in the mean time is take more prednisolone. I was down to 20mg before started Xeljanz and had a small amount of bleeding with stool but not this annoying amount I am getting now.
Posted 6/12/2019 8:14 PM (GMT 0)
NSSG - thanks for the encouragement. The more I read stories like yours, info on the surgery, and the research, the more I feel confident about the outcome.

Vicky - you sound pretty similar to what’s been going on in my household for the last few weeks... think the only difference is we gave up on prednisone. The side effects of that were the last straw! It’s been unfortunately a downhill slope for us, and very quickly with xeljanz. Just be cautioned if you can learn anything from my husband’s case.

Side note: I had ordered some LDN from our pharmacist Monday and it was ready today, so we are going to give that a shot to keep him happy until we leave Sunday (instead of Thursday) for the hospital. I was so hoping we would be successful with the LDN long term, but we knew he was a case that would need surgery at some point and were just putting off the inevitable.
Posted 6/12/2019 9:45 PM (GMT 0)
I'd be hesitant about emergency surgery. I planned mine well but it only took 4 weeks to get it. I was already prepared. I stopped xeljanz (my last resort) and I refused to even start pred. I think it helped with healing. Since I could plan it ahead of time I knew it was all going to be done laparoscopic whereas with emergency you never know if they'll just cut you open. Colectomy is no joke. Also you will want to know how many steps your surgeon thinks is needed. Definitely plan ahead. I'm glad you already had the consolation. I wish you and your husband all the best.
Posted 6/14/2019 10:13 AM (GMT 0)

lopomme said...
Celeriac - I’m so happy to hear you’re doing better! That’s so scary. I know what your husband was feeling for sure!! That’s how I’ve been watching mine on the sidelines.

We also tried remicade prior to xeljanz and he had a reaction to that too. That was terrible. He had flu like symptoms and was on the ground shaking, cold and couldn’t get warm. I think that was actually just as scary. I was throwing hot blankets from the dryer on him until I could get his mom over for our kids to take him to the hospital. Hopefully remicade doesn’t hit you like it did him.

That sounds terrible!

So far I’ve been lucky (with the exception of the Xeljanz) and have tolerated all my meds without issue. I’ve had my second maintenance dose of Remi, so they were able to push the last infusion to one hour and still no issue — just seemed a bit more tired than normal, afterwards.
Posted 6/14/2019 12:21 PM (GMT 0)

Andrina said...
I'd be hesitant about emergency surgery. I planned mine well but it only took 4 weeks to get it. I was already prepared. I stopped xeljanz (my last resort) and I refused to even start pred. I think it helped with healing. Since I could plan it ahead of time I knew it was all going to be done laparoscopic whereas with emergency you never know if they'll just cut you open. Colectomy is no joke. Also you will want to know how many steps your surgeon thinks is needed. Definitely plan ahead. I'm glad you already had the consolation. I wish you and your husband all the best.

Are you in the US? Unfortunately in Canada the free cost means a longer wait (6-7 months if you plan like you’re suggesting), unless you’re emergency, which is why we are doing it that way. In which case, it’s anywhere from 2-5 days to get the surgery. But if he can’t get the surgeon he wants, he won’t do it.

I did read about laroscopic. Is that what you had? Are the scars visible? How was your experience?
Posted 6/14/2019 2:45 PM (GMT 0)
Here's some info on laproscopic colectomy scars.

One month post surgery:
https://ronnilee-fightingforit.blogspot.com/2012/11/healing-incisions.html

Six months after surgery:
https://ronnilee-fightingforit.blogspot.com/2013/04/the-adaptation-period.html
Posted 6/15/2019 12:17 AM (GMT 0)
Awesome!!! Thanks ipoop! always getting us the goods in the UC neighbourhood
Posted 6/16/2019 3:47 PM (GMT 0)
Hi lopomme, thinking of you and your husband, hope everything goes smoothly this week!
Posted 6/16/2019 7:44 PM (GMT 0)
Yes I have scars plus the big one from the ostomy site. Yes I'm in the US. Yes I had it laparoscopically. My experience was good. I was on pain meds only one to two weeks after each surgery. I hope it all goes well for your husband.
Posted 6/17/2019 1:51 PM (GMT 0)

poopydoop said...
Hi lopomme, thinking of you and your husband, hope everything goes smoothly this week!

Thanks poopydoop et. al! It’s very humbling to come check the forum and have your virtual comradery.

Checked in on father’s day (Sunday) so to beat the surge of patients the rest of the week. His GI doctor and surgeon come in today.... just got word from one of the nurses he could go as early as tonight!

He’s planning his bucket list of food and that’s exciting. We're watching the Toronto raptors parade shortly, and can hear all of the commotion outside smile so little things are making it bearable!
Posted 6/17/2019 3:48 PM (GMT 0)
Good luck, keep us updated through the process. Know the whole lot of us here are rooting for him, and hoping he gets quick relief! Just gotta get his large intestine exorcised and banished! That way he can look UC in the rear-view mirror and get back to an excellent quality of life without limits ;-)
Posted 6/17/2019 4:06 PM (GMT 0)
Yes, keep us updated. I am sorry you're dealing with this. After the first step, he will have the ostomy, but he will be able to eat all the food he's been avoiding! Good luck.
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