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Xeljanz Update - 3 years

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Ulcerative Colitis
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Posted 5/4/2019 9:42 PM (GMT -5)
Husband has been on Xeljanz now for three years -- complete remission and no apparent side effects so far. We just had the yearly checkup with GI at Johns Hopkins. Sounds like they still don't have too many patients on Xeljanz and my husband's great success is an outlier.

He is currently on 20 mg daily (10 mg in morning and 10 mg in afternoon). At last year's appointment we were advised to stay on the 20 mg dosage. This year, however, due to reports of a higher than normal incidence of thrombosis with RA patients who have been using Xeljanz, we are advised to reduce down to 10 mg. First need to do stool test to make sure no evidence of active disease, and then will reduce by 5 mg every couple of months. This reduction is new for us and the doc, so we will play it by ear and see how it goes. If he can stay in remission at 10 mg that would be great, since this is very expensive medicine, and less is always better than more.

Also warned that the another apparent side effect with the Xeljanz that has been reported is increased risk of Shingles, so he needs to get the new Shingrix vaccine.

If Xeljanz works, it is great since it is a pill. The good thing about it, compared to other biologics, is that you should know within a matter of weeks whether it is working. And one shouldn't develop antibodies to it.

Also told that Stelara should be approved soon for UC.
Posted 5/5/2019 1:39 AM (GMT -5)
Dear suzy-q thanks for the update! I just had my first scope since starting xeljanz 15 weeks ago and apart from two small spots with minor inflammation everything is healed. (Although still awaiting biopsies). I am scared of doing the dose reduction as this is the only drug which worked for me - but we will see.... (i also need to pester my doc again about shingrix. Although shingles should not be fatal just unpleasant)
Posted 5/5/2019 7:32 AM (GMT -5)
Great to get a longer term outlook on the use of Xeljanz as i am a relative newcomer to it.
I also are on Xeljanz and just approaching 6 weeks of using it.
It is working great usually only 0-3 bms per 24 hr day.
My specialist wants to try me at 5mg twice a day at 8weeks because of my age.
Good if it works if not will be happy to stay at 10mg twice per day.
Im in Canada so the drug cost is not an issue.
A pre requisite for me starting Xeljanz was to get the Shingrix vaccine especially as I have had shingles twice in my lifetime and thats plenty if can be avoided.
Posted 5/10/2019 9:31 AM (GMT -5)
My latest calprotectin came back at 40. I HAVE NEVER HAD A NORMAL CALPRO VALUE BEFORE (and i have tested it approx 1 billion times in the last 3 years).
I am sad that the doc will now make me reduce the dose of xeljanz though. I wish it was just safe to stay at the high dose.
Posted 5/13/2019 6:13 AM (GMT -5)
Hi i have had my post-scope follow up with the dr. He said i have to reduce the dose of xeljanz by 50% basically because my health insurance says so (nb i am in europe not the US)
:'( SOB
If I flare again I'm allowed to go back up to the higher dose.
I also asked about shringrix vaccine for the billionth time. His attitude was if you get shingles you stop taking xeljanz for a week and then you can recover spontaneously. I might try asking my gp instead.....
Posted 6/6/2019 7:15 AM (GMT -5)
Hey Suzy q, hows your husband doing on the lower dosages?
Posted 6/6/2019 10:50 AM (GMT -5)
Great to hear. My GI who is one of the top IBD specialists in Canada claims he is not having great results or his colleagues with Xeljanz. I see on this forum really good results but my GI claims if I start to fail remicade he would not put me on it.
Posted 6/6/2019 11:50 AM (GMT -5)
@Hugo - my husband is at the 5-1/2 week mark now of being in xeljanz and is not getting better sad we are so hoping it would be the wonder drug everyone is talking about. (We are in Canada too and receiving treatment at Mt. Sinai in Toronto...which is also supposed to be a top notch gastric treatment hospital). He is 1-2 weeks away from needing hospitalization and surgery.... so looking into other options of treatment.

I keep seeing a trend of people who are having success with xeljanz usually are in combination with prednisone or tapering when they see results. It’s like it needs a helping hand to get going or something before it can kick in.
Posted 6/6/2019 1:02 PM (GMT -5)
Hi i was off prednisone when i started xeljanz and initially got worse before getting better because i had to stop some of my other drugs. My hospital has seen a lot of good results with xeljanz especially it seems to work in people who failed everything else. So I'm surprised they would write it off without even trying.
If you read the guidelines for arthritis they say it takes 2-6 weeks to work for that, so i reckon that's a good guideline.
Posted 6/6/2019 2:22 PM (GMT -5)
@poopydoop - ah thanks for clarifying you were off prednisone! I Feel like I’ve seen more cases in the steroid territory prior to starting.

I’ve encouraged my DH to hold off on the preds for a little longer but he is definitely worse for wear. Like needing hospitalization worse (18-20x/day, straight blood). So, it’s not very much longer he can hold out for. It’s not me who is dealing with it so I can only empathize what he (and you all!) go through each and every day. I do have yet to come across a case where xeljanz hasn’t worked. (Maybe one case ?)
Posted 6/6/2019 2:39 PM (GMT -5)
Hi im sorry to hear he is suffering so much :'( I was convinced i was going to be the one person that it didn't work for until it did work. Of course i don't want to give you false hope on this either. Officially the clinical trials showed 50% of patients were in remission after one year. So that's 50% that it didn't work for. I think Andrina said she tried it and it didn't work- she just had her final surgery.
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