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Advice: off label Stellara or Xeljanz use

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Crohn's Disease
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Posted 1/6/2016 5:19 AM (GMT 0)
I'm interested in getting some advice for off label usage for either of these drugs.

Does anyone know if the patient assistance program can be used for off label usage for either of these?
Has anyone been able to get their insurance company to approve off label use? If so, who is your insurance provider?
What does it take to get a doctor to support an off label prescription?

I'm at a crossroads with my doctors and need to make some big decisions soon. I really appreciate any advice that could help with this.
Posted 1/6/2016 7:38 PM (GMT 0)
You'd need a willing doctor that would take on your insurance company. It would be a fight but it is one that plenty of people have won. I would concentrate on Stelara over Xeljanz. Stelara has shown more effectiveness for Crohn's than Xeljanz has (which has done well for UC). Also, Stelara has already been submitted for FDA approval for Crohn's. Since it is likely to be approved, your insurance company would be more likely to go for it. After all, some time later this year it won't be off-label anymore.

Only issue is that I believe the Crohn's dosage is a lot higher than the psoriasis dosage of Stelara. In the phase III trial they were giving it as an infusion rather than injection because of this - don't know if that will be the case once it's approved for Crohn's. So it may be a lot of shots to make that dosage, and I don't know how that affects cost and insurance.

I started on Humira off-label back in 2004, years before it was approved for Crohn's. I had no issue whatsoever obtaining it, but at the time my company was using a small local insurance company. We now have Aetna and I wouldn't expect things to go so smoothly.
Posted 1/8/2016 3:28 AM (GMT 0)
I have been taking Xeljanz off label for the last year for CD. The dosage is triple the approved dosage for RA. It took some doing but my insurance covers it. The doctor had to submit a justification and the insurance granted a one year approval which was just renewed. I'm not sure what the doctor needed to provide, they handled all communications with the insurance. It may have helped that I was in a CD clinical trial for Xeljanz several years ago so there was some evidence that it may help me. Also my doctor is open to trying new treatments considering I've exhausted all conventional ones and have done many clinical trials. Xeljanz has helped me quite a bit and it's a pill which is convenient. Patient assistance should still be available since I think it's through the drug company not insurance.
Posted 1/8/2016 2:56 PM (GMT 0)
My Dr just suggested these two options to me Wed if we decide the Simponi and MTX are no longer working. She said it can be a battle with the insurance but she has done it for both and would do it again. I think you do need a willing Dr because they are the ones that have to convince your insurance.

There are some clinical trials starting next month for Xeljanz for Crohns, that was also an option for me. Maybe check and see if you are near any of the trials.
Posted 2/17/2016 7:36 AM (GMT 0)
HI Dave--

How are you doing with Xeljanz? Have you had any gnarly side effects? How bad was your disease prior to starting therapy compared to now ? I'm one of those been-on-every-biologic types and I'm always researching an exit strategy when its time to move on.

Hope you're feeling awesome!
Linn
Posted 2/17/2016 1:08 PM (GMT 0)
I'm still doing well on Xeljanz. No side effects that I'm aware of.

My disease was very active before I started taking Xeljanz. Not the worst it's ever been, but very active. On a scale 1-10, 1 being the worst it's ever been for me (hospital, surgery) and 10 being symptom free (which has never happened in 25 years with CD), I was probably at 3 or 4 when I started and improved to 7 or 8. Bleeding stopped, BM's much more solid and less frequent and urgent although I can still go 6 times a day sometimes. The biggest change has been more energy and much less pain. I weigh more now than I ever have which for me is a good sign. It's been a very gradual but significant improvement
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