Thanks to those of you last week who asked me to share my Stelara update.
After that, I took a shot of Stelara every eight weeks for months. I was still seeing no improvement. I would need to be on prednisone, starting at about 40 milligrams — which I’ve been using for the last four years almost constantly — and try to taper down gradually. At 20, 10, or 5 mg, I would need to go back up on it because my symptoms kept returning. It was extremely frustrating and disheartening.
My doctor had asked me to use Stelara for about a year before we changed strategies. Frankly, because I don’t have many other options, I figured we might as well. But I also didn’t want to get trapped in the cycle of prednisone increases and tapers.
A couple of months ago, my doctor said he was going to ask my insurance company if they would allow me to do one more infusion — since you get more medication that way all at once — or to let me take the shot every four weeks instead of every eight weeks. I figured they would never let me do either. My insurance generally doesn’t approve of such things.
But after a long battle, we won! My insurance company granted approval for an injection every four weeks rather than eight weeks.
I admit I wasn’t hopeful at first; nothing has worked, why should this? But now I’ve done shots every four weeks for the last two months. I got off prednisone about two weeks ago and I haven’t flared up. So could the double dose of shots be working? I’d like to think so. I’ve had occasional pain or nausea, but these times have mostly been mild and easily taken care of. I’m starting to think we’ve found something that might work for a while, at least.
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