Stelara off-label

I don't have experience with this, but I hope you get approval!

I have been approved for Stelara, off-label. It's been a miracle for me. After 6 years of nothing working, I am finally in remission.

My doc submitted all my failed med history (listing each med, date(s) tried and failed response. Then cited the Phase 2b trial results for Stelara. There is also a publication by a Dr. William Sandborn out of UC San Diego. He is considered a west coast expert. He wrote speaking strongly for Stelara.

it works by a completely different mechanism than any previous med has, so it's well worth trying for in my opinion!

good luck! My insurance really accepted it quite well. I'm on 45 mg / 12 weeks (after induction).

No I don't believe he personally wrote. He has a medical publication that was released in May 2011 which is what my GI referred the insurance company to in order for them to approve it. We all expected a fight, but given the severity of my disease and the lack of other medications... and the fact that Stelara IS an approved (safe) medication, it was easier than we expected.

Should the insurance company have rejected the appeal, we would have gone through Johnson and Johnson and appealed on a compassionate use exception. That was to be our next step. To do that I would have had to fill out the financial aid application and, while I would have failed for typical use, since it had been insurance denied, my nurse had been working with a pharmaceutical rep at J&J who was going to help us with compassion use.

Note though, that the process took about 2-3 months. It wasn't as easy as approving Humira, but... it happened and I will hold hope that you can get it too. Within a month I was getting better - CRP was at 50 and dropped in half at a month. (sed rate went from 84 to 53)... Within 2-3 months all my inflammation rates are "normal"... high side of normal, but normal nonetheless. I do still know I have some disease in my rectal area, but nothing at all compared to before. And, I live more or less like a normal Crohnie in remission ;-) (We are never quite "normal" again, are we?) But, I do notice, probably due to scar tissue, I still need to drink lots of water or I get dehydrated.

Just an update--my request was rejected by my insurance company. We're going to appeal, but its onward to the Johnson and Johnson Patient Assistance Foundation App. Sigh.

This is so frustrating. I just want to eat. It's really hard not to cry right now.

It's approved for psoriasis, so she wrote it for me off-label. Don't be scared of Tysabri. I stopped taking it because it stopped working for me, not because it made me sick. Tysabri made me feel great while it worked and I whole-heartedly encourage you to go that route. If you respond, you'll have the chance to feel like a million bucks like i did.

Got my first dose today. 270 mg, DO YOUR THING! I'm pumped.

I had no side effects whatsoever. I felt healthy as a horse and I hope you feel the same.