Thanks to those of you last week who asked me to share my Stelara update.
I started taking Stelara (ustekinumab) on Nov. 1, 2016. I had an infusion of it that day. My doctor was excited because I was his first patient to receive it under the new FDA approval.
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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Thank you for sharing Judy’s story with Stelara. I parallel her is some ways. I have failed 4 biologics and began my infusion dose of Stelara 4/17, I had a brief relief of some symptoms but flared after 5 weeks, did my 8 week maintenance dose, no relief, still flaring, but a switch flipped 2 1/2 weeks later and I’m beginning to heal again. The Crohn’s is very active in my esophagus as well as lower GI tract. My doctor is trying to get the frequency of injections increased. It can be so frustrating and scary going through these drugs, but it helps enormously to read about others patients’ experiences on a valid web site. I am happy to see the article on SCD as well, we all know that each case of Crohn’s is very different but thank you for informing people about medical and natural approaches to disease. I value your information, way to go, thank you!
Hi Stephanie:
I’m Judy and I wrote the story. 🙂 I share a weekly column on IBD News about my triumphs and failures living with Crohn’s. I hope you’ll join me from now on. 🙂
Judy
Hi,
reading your update a question immediately pops up in my head: what was your induction scheme and dose on November 2016?
I started with stelara in march 2017 and the induction dose of 540mg stelara IV almost immediately kicked in.
Best regards
Dominic
Actually, I do’t know my induction dose!
Judy you seem to be telling my story! I to started Stelara in January my eight week injections are only good for about three weeks. I’m waiting to get approval for them to increase those to four weeks however I have found my infusion booster I received med treatment in April to be the most effective. Do you mind if I ask who your carrier is?
Hi Jennifer: I would rather not say who my carrier is on a public forum like this, but if you email me at [email protected] I will share it with you.