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Ulcerative Colitis
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Posted 8/13/2019 7:26 PM (GMT 0)
I will be starting Xeljanz soon. I wanted to get some feedback on it from recent uses for people here. I am having a very stubborn and terrible proctitis flare on and off for a year now. Prednisone not really helping, enemas not helping, Delzicol, Budesonide not helping. This is the first time I'll be trying a stronger drug. GI was originally going to put me on Humira but thought Xeljanz might be better since it's in a pill form. Easier to take. Also wants to hold off on mp6 to not stress my immune system all at once. I am bleeding quite a bit. 10 bms a day. Lots of accidents.
Posted 8/13/2019 10:47 PM (GMT 0)
Hi I am 13 weeks in to Xeljanz. So far for me it’s not great. Lots of bleeding and urgency. Although stool is now more formed. Calprotectin down from 407 in February to 206 in July after being on Xeljanz for 8 weeks. Unfortunately bleeding is just getting worse. I suspect this was due to stopping Azathioprine prior to starting Xeljanz.

I am having a flexi sig tomorrow so will hopefully know more then. I will report back with findings. My team seem to think the cause of bleeding could be unrelated to my UC.

I am sorry you are also having a rough time.
Posted 8/14/2019 12:43 PM (GMT 0)
I have been on Xeljanz since March and it is working fantastic for me.
Prior to this I was on Humira following by Entyvio and the success rate for me was only so so.
With Xeljanz I have formed stools, BMs in a 24 hr period is usually 1-4. I can't speak on bleeding as I never have that anyway.
I started on 10 mg twice daily and after 8 weeks they changed my dose to 5 mg twice daily.
That did not work as well for me so i went back to the 10 mg twice daily.
I no longer plan where toilets are when away from the house, which is so nice.
Posted 8/14/2019 1:47 PM (GMT 0)
It’s great you are doing so well with it limey.

Had my flexi sig this morning. As I suspected I still have moderate/severe inflammation from the rectum all the way up to the splenic flexure with friable tissue and contact bleeding. No Hemmerhoids.

No idea where I go from here.

I have been told by my nurse that the consultant will probably want to give it another 3 weeks so 16 in total before changing treatment.

I’m gutted really thought it would be the treatment for me after hearing so many success stories. I guess it just goes to show how different everyone is.
Posted 8/14/2019 5:50 PM (GMT 0)
Hi

After battling the insurance company for months, I have been on Xeljanx since March. Started out on the 10mg x 2 daily starter dose. Seemed like it was working, but could have been the lingering benefit from Prednisone taper.

Dropped to 5mg x 2 daily and quickly started to slide downhill quickly. Blood/mucous/multiple BM.

Doc re-upped me to the 10mg x 2 dose mid June with no improvement since then for me.

Back on Prednisone 50 & 60mg not helping either with the Xeljanz. Very odd Prednisone is not helping either.

Important to note that the higher 10mg dose was just given a FDA black box warning due to high risk of blood clots and some docs are skipping the higher starter dose now. I'm taking a baby aspirin to mitigate clot risk (I know, contra to UC guidelines, but GI was OK with it.) I think I'll be discontinuing Xeljanz shortly, so I'm not overly concerned.

I wish you luck with your Xeljanz treatment!
Posted 8/14/2019 5:58 PM (GMT 0)

Terrapin said...
Hi

After battling the insurance company for months, I have been on Xeljanx since March. Started out on the 10mg x 2 daily starter dose. Seemed like it was working, but could have been the lingering benefit from Prednisone taper.

Dropped to 5mg x 2 daily and quickly started to slide downhill quickly. Blood/mucous/multiple BM.

Doc re-upped me to the 10mg x 2 dose mid June with no improvement since then for me.

Back on Prednisone 50 & 60mg not helping either with the Xeljanz. Very odd Prednisone is not helping either.

Important to note that the higher 10mg dose was just given a FDA black box warning due to high risk of blood clots and some docs are skipping the higher starter dose now. I'm taking a baby aspirin to mitigate clot risk (I know, contra to UC guidelines, but GI was OK with it.) I think I'll be discontinuing Xeljanz shortly, so I'm not overly concerned.

I wish you luck with your Xeljanz treatment!


This happened to me too!!! I was advised to go back up to 40mg Pred 7 weeks ago and it did nothing! Really unusual for me as usually it sorts me out fast. Hence why my doctor wrongly thought that my bleeding could be unrelated to the UC.
Posted 8/20/2019 4:59 PM (GMT 0)
Terrapin, what treatment are they suggesting for you since both Xeljanz and a higher dose of prednisone doesn't seem to be working for you, unfortunately.
Posted 8/20/2019 5:00 PM (GMT 0)
VickyUC - is the bleeding all due to UC based on the results of the flexi sig? I had one too and that's what they told me. What is your treatment plan for the future?
Posted 8/20/2019 5:35 PM (GMT 0)
Yes it’s all the UC nothing else found. I spoke to my consultant and he said the next option is vedolizimab. Hoping to start it in 4-6 weeks if funding is approved. He said that I could still see a turn around I’m the next few weeeks as 16 weeks in total will show the maximum therapeutic benefit. So as always I try to remain optimistic.

I’ve also been using the Budenofalk 2g Foam enema since last week and the bleeding has reduced dramatically.
Posted 8/20/2019 5:45 PM (GMT 0)
VickyUC - I have not heard of vedolizimab. Is it new? My GI said if there is no improvement w/Xeljanz after 8 weeks they will switch to something else. I will keep the Budeofalk in mind. That is good to know. I wish you and everyone here luck. Such a difficult disease to live with and manage!
Posted 8/20/2019 5:46 PM (GMT 0)
I see that Vedolizimab is Entyvio. Just looked it up.
Posted 8/20/2019 5:56 PM (GMT 0)
MLP2060 unfortunately I am wrapping up a 5 day hospital stay for treatment with Solumedrol. 80mg x 3 daily with limited improvement. Next up is Cimzia since I’ve tried everything else under the sun.
Posted 8/20/2019 6:07 PM (GMT 0)
Sorry to hear this. I truly hope you find a drug soon that will help!
Posted 8/20/2019 6:48 PM (GMT 0)

MLP2060 said...
I see that Vedolizimab is Entyvio. Just looked it up.


Yes that’s right I’m in the UK, we don’t tend to use the brand names here. I was offered this or Xeljanz. I left the choice up to the doc. He said we should try the Xeljanz as if it worked would be more convenient for me..... so far this hasn’t proven to be the case.

I am sorry to hear this terrapin hope something works for you soon!
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