In a few days, I’ll reach my six-month mark for being on Stelara, which I started on Nov. 1, 2016. I did not have high hopes, but it was about all that was available to me. My doctor had explained to me a few months before, when it was clear Cimzia wasn’t working, that it was likely none of the drugs on the market would help me too much. I’ve been sick for 16 years, and already have failed on everything else I’ve tried. The most remission time I’ve ever had is about three months.
Still, you never know, so we put our faith in Stelara. It had just become available for Crohn’s patients. In trials, it showed symptom relief as early as 14 weeks and as late as 44 weeks, so I tried to think about long-term rather than short.
Now, at my six-month mark, I’m not sure it’s helped me. I’ve been back on prednisone several times. Toward the end of my course of prednisone, or when I’ve been off prednisone for a week or two, my symptoms have come back. I’ve had to go on high doses of prednisone, only to taper down and have the same thing happen again.
I say I’m not sure Stelara’s helped me, instead of saying it has definitely not helped. I’m currently on a low dose of prednisone now (2.5 milligrams), and while I’ve felt some of my symptoms returning at times — lack of appetite, nausea, esophageal pain — they’ve all been minor compared to what I’ve dealt with in the past. If it stays like this when I go off prednisone, I probably can deal with it by taking the occasional percocet and resting when needed.
So, I’m nervous because I never go off prednisone without a negative reaction. And, as usual, I don’t really have time for a flare-up. I’m hoping I’m really getting better this time, and that I’m being realistic, too. Likely, I will be back up on prednisone before I know it, but maybe not. Only the future will tell.
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FYI – prednisone rebound is common and very difficult to get over. Try reducing from a moderate amount like 20 mg per day very slowly and alternating days. This worked for me while I was also waiting for purinethol to start helping. I also followed the SCD diet religiously. For example, wean off by taking 20mg one day, then 17.5, then 20mg, then 17.5 for a week or so, then 20/15/20/15…, then 20/10/20/10… Once you get to 20/0/20/0 start reducing the high days. So, 17/5/0/17.5/0…15/0/15/0, etc. My old GI who was a pro (since retired) suggested this so that my body didn’t notice my weaning off and react with inflammation. Once I was done, the purinethol, 50 mg/day worked for 7 years all by itself and I went back to a normal diet too. I did eventually have a flare, use Remicade for several years, Cimzia off and on, etc. but overall my health hasn’t been too bad considering how long I’ve had Crohn’s colitis. Good luck!