Advice Please

[Lissa.Anne]

Hello Everyone. I'm just looking for some advice on what my next step should be.

So I'll give you some background. I had had a pretty bad flare up starting a couple years ago. We tried prednisone and antiobiotics. That didn't help so I started on a Clinical Trial for Ustekinumab. It seemed to go well for a couple months and then I got quite bad again. I ended up being admitted to the hospital and having an intestinal resection. Now its 8 months after I'm feeling almost like I had been when my flare up first started, I just had a colonoscopy and have a large amount of disease.

I don't have benefits anymore so my doctor gave me a couple options.

1. If I had benefits they would have wanted me to be on remicade or humira. To get assistance from the government to help cover the cost I would have to do a round of prednisone and azathioprine for 3-4 months and then apply for it.

or

2. Another Clinical trial. This one for Amgen 181


I originally thought the trial would be a good idea (mostly because I HATE being on prednisone -- I feel like a crazy person on it). But now the thought of being on another trial, and perhaps a placebo, is making me very nervous. I don't want to let it get any worse then it already has.

Any advice would be very much appreciated. Thank you

 

[DJW]

Hi. Sorry you're going through this.
Thankfully you live in Ontario. Fill out the forms for the Trillium Drug Benefit Plan. You can get the forms from Shoppers Drug Mart or Service Ontario.

I've used the plan in the past when I had no benefits. Its a life saver.

Sending you my support.