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New drug trial XELJANZ for RA now for Crohns

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Crohn's Disease
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Posted 9/15/2015 6:30 PM (GMT 0)
I'm might be in a trial with this new drug, I don't qualify for anti map cuz I have a fistula that never heals. This is a new drug by Abbott and it's currently being used for RA. I'm on entyvio now and it's not working. This new pill is take. Twice a day. I will know more as I go to the doctors office. We just had a phone consult.
I gave entyvio 4 months and 5 infusions and mayo said if not better in four months stop and I'm not better, I bleed every day. I still have urgency, cramping, accidents , can't jiggle my gut much, it makes me poop, so no walking :(
Did I give entyvio enough time? I don't know anymore . Urge so frustrating.
Posted 9/15/2015 8:41 PM (GMT 0)
let us know how this goes, im currently received remicade (currently doing an infusion while i type), but still interested to know!
Posted 9/16/2015 12:42 AM (GMT 0)
Interesting, another cross-over med for IBD! Sorry you're still feeling lousy, let us know if you end up in the trial for this med.
Posted 9/16/2015 2:21 AM (GMT 0)
There was a Crohn's trial for this drug maybe 5 years ago that I did. It was only a 4 week trial but I had some improvement during that time. It was a blind study so we didn't know if I was getting drug or placebo.

When Xeljanz was approved for RA last year I asked my doctor if I could take it off label. I had been taking entyvio for 4-5 months and it wasn't working. He was able to check that I had in fact received the drug, not placebo, during the trial so he agreed to prescribe it off label.

I've been taking Xeljanz now for 9 months. It started helping me within a few weeks. It was a slow but noticeable improvement. After a few months the improvement seemed to plateau, so we increased the dose. I now take 15mg (3 pills) twice a day. I'm not completely symptom free but it's the best I've felt for the longest period in many years. I was in pretty much a constant flare for as long as I can remember maybe 10 years. When I first started taking it I got headaches but they went away after a couple months and now I don't have any side effects.

I'm glad to see that they are starting CD trials again. I'm worried that my insurance will stop covering it off label. Good luck with the trial!
Posted 9/16/2015 11:17 AM (GMT 0)
What I forgot to say and is very helpful, the doctor said within 2weeks bleeding should stop and in four weeks less stool trips. I've posted on a couple different sites to get feed back and I forgot this information here.

I need to ask how long before its approved for Chrons and UC because for me to do this is a 4hour round trip every two weeks, a colonoscopy (which I did this year already) beginning and end and a 20 percent chance I might not get the drug. I see my GI this Friday and talk about my situations and where we go from here. Entyvio is so new to him, he doesn't have any input.

I don't know if I had a gut infection before or after entyvio, but after being on flagyl, then flagyl cipro combo for my fissure , I can eat whatever I want without bloating,burping, nausea . I'm feeling ok on pepto bismul at the moment. I'm not near remission at all, though. I have urgency and blood still. And life goes on .....
Posted 9/16/2015 11:21 AM (GMT 0)
Wow Dave that's amazing! So I would rather ask for it off label then do a study, but u got cuz u were in a study right? I wonder if my GI wud prescribe If I don't have RA ?
Posted 9/16/2015 12:17 PM (GMT 0)
Yes I think it was probably easier with my doctor to ok off label because I had taken it before. But it's up your doctor so can't hurt t ask. I've also tried just about every other treatment and many clinical trials, so there aren't many other options for me, which helped with the off label
Posted 9/24/2015 1:39 AM (GMT 0)
This is interesting as I just met with my dr and surgeon today and they changed my diagnosis back to Crohns so they no longer want to do a colectomy. We are doing either a diverting loop iliostomy or a resection. But she did mention I would need to start Entyvio or Xeljanz. I was wondering how I would get the Xeljanz. I tried Entyvio before and didn't think it worked, she doesn't think we have it enough time.
Posted 9/24/2015 10:47 AM (GMT 0)
To get Xeljanz all you need is a normal prescription.
Posted 9/24/2015 2:41 PM (GMT 0)
I guess I was more thinking about my insurance if they would approve it since it is FDA approved but not for Crohn's. From what I read in some RA reviews it is very expensive.

In a lot of the reviews people mentioned infection and getting sick. Have you noticed any increase in colds or infections Dave? Or do you think it is probably about the same risk as Imuran, Remicade ect with the immune suppressing?
Posted 9/25/2015 1:53 AM (GMT 0)
Insurance may be an issue. I was lucky mine covered it and I'm just making a small co-payment each month. In the beginning there wasn't even a copay because the drug company was covering it trying to get new patients I guess.

I haven't had any problems with colds and getting sick. I do suppose it's the same as the other immune suppressing drugs we take. If anything, I've been feeling less "under the weather" because my energy level is so much better since I've been taking Xeljanz, and I've been able to eat better and exercise more.
Posted 9/25/2015 12:47 PM (GMT 0)
Thanks Dave that's great you have the energy to workout. I'm glad I found someone on it. Especially because I'm not up for tryin Entyvio again.

It's interesting that Miracles posted they thought they got a gut infection from Entyvio because I ha a similar scenario. And although Simponi healed my rectum and sigmoid and all my bleeding I have the weird spot full of air and pockets and that didnt get better until I started cipro and Flagyl.

I suspected the Entyvio messed with my gut balance/flora something but didn't think the doctor would believe it was the entyvio.
Posted 12/2/2015 6:29 AM (GMT 0)
Has Xeljanz been approved for UC or Chrone's in the US? I can't find any news releases that say it is. The best I've found is a Pfizer study in Phase 3.

If it's not approved, how do you get access to it? Or are these posts from other countries where it's allowed?
Posted 12/2/2015 12:26 PM (GMT 0)
It is only approved for RA in the US. But as long as it's approved for something, your doctor can write a prescription. It's considered "off label". Once you have a prescription the pharmacy will fill it. Pharmacies do not know which condition you have.

Paying for it is another matter. Your insurance company knows if you don't have RA. Insurance may not cover "off label" drugs without special approval. To get approval your doctor may need to appeal your case with the insurance company.
Posted 12/3/2015 5:23 AM (GMT 0)
Doctors have been able to convince insurance companies to pay for Xeljanz? It can't be cheap. Does anyone have experience with getting insurance to pay for it?

Is Xeljanz being manufactured by more than one drug company (JAK inhibitor)? I saw Mayo was studying it and I think Pfizer too.

I talked to a friend of a friend taking Stelara. He must be doing this same off label approach? He failed Remicade, but really likes Stelara.

I like what I've read of Mongerson, but they're just starting phase 3, so it's still a couple years out. For anyone in Canada, you might be able to get into the study on this. Same with Qu Bio's SSI's. Those Canadians get all the good stuff. :)
Posted 3/1/2016 10:24 PM (GMT 0)
Dave123:

Are you still using Xeljanz and is it working? My husband has bad UC, surgery is scheduled for a few weeks, but just got approved off label for Xeljanz. Has not had much luck with the other biologics and entyvio did nothing but result in super extreme exhaustion. Trying to decide whether Xeljanz is worth a shot. How long did it take to kick in?

Thanks
Posted 3/1/2016 11:06 PM (GMT 0)
I did not get on this. I'm taking Valtrex, cipro, flagyl ,and taking Metamucil capsules with meals. I'm doing good. Probiotics do not help me. I'm on the antibiotics because of a fistula that tries to heal then opens up again or tears cuz of diarrhea and pressure. I'm doing good though. Valyres for chronic fatigue . Has he tried antibiotics ?
Posted 3/1/2016 11:18 PM (GMT 0)
Dave123:

Are you still using Xeljanz and is it working? My husband has bad UC, surgery is scheduled for a few weeks, but just got approved off label for Xeljanz. Has not had much luck with the other biologics and entyvio did nothing but result in super extreme exhaustion. Trying to decide whether Xeljanz is worth a shot. How long did it take to kick in?

Thanks
Posted 3/2/2016 2:44 AM (GMT 0)
Yes I'm still taking Xeljanz and doing well. I think I noticed it started working within the first month for me, with continued gradual improvement over the next few months. I would probably give it a shot if he can hold out on the surgery. The pills are easier to take than infusions. None of the other biologics worked for me either other than Tysabri which got pulled due to PML risks
Posted 3/8/2016 5:21 PM (GMT 0)
So glad for this web site - keeps me informed more then any doctor!
I will talk to my GI when I see him later this month about taking Xeljanz. I have fistulas now for a 6 years and nothing I took (Biologic/Anti TNF/ antibiotics) worked. Entyvio was my last hope but it did nothing after 6 month's. I do have arthritis, so I hope insurance would NOT be an issue - Hope is the word of the day every day!
Posted 1/23/2017 2:16 PM (GMT 0)
I thought I'd give an update on Xeljanz which I've been taking now for over 2 years. Just had first colonoscopy since that time and results were "basically normal"! No signs of Crohns except at the spot where I had surgery 20 years ago there was some mucus and narrowing. I've been in "clinical remission" for a while but this confirms it. My longest, best stretch in 27 years. Xeljanz is the only med I'm taking now and insurance is still covering it. I've been at this too long to think it will last forever but I wanted to give this update for others to consider when regular options have been exhausted.
Posted 1/23/2017 5:07 PM (GMT 0)
Husband is on Xeljanz for UC since April and also is in full remission - clinical, histological etc. Getting it off label.
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