I’m headed to Philadelphia, where my doctor is located (I’m in New Jersey) to start my new treatment regimen of Stelara. To say I’m not looking forward to it is an understatement.
Stelara was approved for the treatment of Crohn’s disease only about a month ago. Before that, an injection regimen of the drug was used very well in psoriatic arthritis patients. (Interestingly, my husband has psoriatic arthritis but he doesn’t use Stelara.)
The Stelara regimen for Crohn’s disease starts with an hour-long infusion in the infusion center (and I know how it goes — between the set-up and the monitoring before and after the infusion, I will be there for much longer than an hour), followed by a shot at home every eight weeks. There’s about a 34 percent chance that a patient will go into remission, and the remission could take almost a year to achieve.
Unless you’re someone like me.
Since I was diagnosed 15 years ago — and had symptoms for much longer than that — and have used so many different treatments, the chances that I’ll go into remission are much lower. My doctor refuses to give me odds, except to acknowledge it’s not nearly as likely as unlikely. Still, we have to try.
Stelara so new for Crohn’s
When I asked my doctor what side effects there were from the infusion, he said there should be none. I’m not sure I’m buying that. When I was on Remicade, after the first two infusions my muscles were incredibly sore for two or three days and I was pretty uncomfortable. So I’m expecting something like that.
The thing is, Stelara is so new for Crohn’s disease that when I Google it, I can’t find anything about actual patient experiences. For my doctor, I’ll be one of the first to be using it. Can you say #guineapig?
In the meantime, I went off Cimzia, which stopped working about two months ago. I’ve really been enjoying not getting stuck with a needle jammed into my stomach every week, but that’s about as far as my enjoyment goes. I’ve been holding it together with Prednisone (30 mg dose; every time I try to take it down to 25 mg I get incredibly sick) and Percocet (as needed). I’ve gained weight from the Prednisone, I’m bloated and uncomfortable, I’m tired but can’t sleep, and hate using painkillers just to get through sometimes. Stelara must be better than that, right?
I can only hope so.
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