HealingWell
Search Close Search
☰

Anyone with experience on Xeljanz?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/4/2016 6:43 PM (GMT 0)
Surgery is looking like the last option, but our GI suggested we get a second opinion on treatment options beforehand. Doc we met with today mentioned that several of his colleagues have prescribed xeljanz off-label to UC patients who have seen positive results.

Has anyone used Xeljanz for UC and what was your experience?

Is it realistic to assume that insurance would cover off-label prescription?

Thanks.
Posted 1/4/2016 6:57 PM (GMT 0)
I was told that I couldnt get it off label, but Im in Canada so Im not sure. That came from the company itself though. Id love to try it before surgery as well, but not sure itll happen
Posted 1/4/2016 6:59 PM (GMT 0)
Have you tried Cyclosporine? It is very effective and then maybe a maintenance drug will work for your son after that.

I've been offered Stelara, still fighting that out with my insurance company. My GI offered me Tysabri before I chose surgery.

Doesn't Xeljanz have a bleeding risk associated with it?

It depends on the insurance company but they are usually willing to cover most meds off-label if you've failed the on-label drugs first. It's also an economics thing, they'll be on the hook for some surgeries that will cost way more than meds.

Has your son tried Antibiotics to treat the UC?

I'm very happy with my surgery, it has given me back my life.
Posted 1/4/2016 9:38 PM (GMT 0)
There was a trial for xeljanz at the hospital near me. I opted for Entyvio instead of the xeljanz trial. The situation with the trial was that you couldn't have taken a biologic for a certain # of weeks before getting into it and I didn't want to wait that long. My GI also said she had sent quite a few people to the trial and none of them responded. I guess you have to take it for what it is, people with cases that are unresponsive are much less likely to respond to anything. I am 99.9% sure xeljanz would have done nothing for me and it would have pushed back my surgery. Surgery has definitely, without a doubt, given me the best outcome out of all the stuff I've tried. Very thankful to be out living life without worry about the toilet smilewinkgrin
Posted 1/5/2016 12:14 AM (GMT 0)
@marauder -

I've often wondered what would happen if, for example, you were to go to a GI an Buffalo, US. Even though you would have to pay for the consult. Would this doctor be able to prescribe it off-label? and if so, would it then be covered by a drug plan here is Canada? Or would one have to pay for it put of pocket?

I was about to drive to buffalo for a colonoscopy when I first became ill because of the six month wait here, but the day before I was to leave I ended up in the hospital here anyway and had an emergency colonoscopy.

I'll never forget calling the doctor in Buffalo. The guy's secretary actually called me back within 20 mins and said they could arrange a hotel and I could have my colonoscopy the next day if I wanted. The cost was $1,350 USD + hotel fee. She would take care of everything for me and I just had to give her 24 hours notice before I wanted to come in.

Crazy how fast it is there for a specialist. I was so sick I would have gladly payed and made the trip just to find out what the heck was going on inside me.
Posted 1/5/2016 2:13 AM (GMT 0)

Canada Mark said...
@marauder -

I've often wondered what would happen if, for example, you were to go to a GI an Buffalo, US. Even though you would have to pay for the consult. Would this doctor be able to prescribe it off-label? and if so, would it then be covered by a drug plan here is Canada? Or would one have to pay for it put of pocket?

I was about to drive to buffalo for a colonoscopy when I first became ill because of the six month wait here, but the day before I was to leave I ended up in the hospital here anyway and had an emergency colonoscopy.

I'll never forget calling the doctor in Buffalo. The guy's secretary actually called me back within 20 mins and said they could arrange a hotel and I could have my colonoscopy the next day if I wanted. The cost was $1,350 USD + hotel fee. She would take care of everything for me and I just had to give her 24 hours notice before I wanted to come in.

Crazy how fast it is there for a specialist. I was so sick I would have gladly payed and made the trip just to find out what the heck was going on inside me.

Ya its incredible how fast the US system is. Ive thought about this, but the problem isint with the GI, its with the company. They said they wouldnt give it to the patient since its not approved. I see my GI on Thursday, so ill update you then!
✚ New Topic ✚ Reply