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I am really struggling with tapering and hoping someone can shed some light on my situation. I was diagnosed with PMR because I had pain in my hips ... only able to hobble around ... and had a 15 on my CRP. This was December 2021. I was put on 20 mg a day of Prednisone and felt GREAT. But I cannot taper. 18 months later, I'm at 23 mg a day and my internist yesterday has just hoofed up the dose to 50 mg a day (with injectable Methotrexate) and no sign of Giant Cell Art. and finally sending me to a Rheumatologist! This is so scary. Bloodwork is getting worse not better.
Internist does not think this is garden variety PMR. I asked him about Regeneron Kevzara that has recently been approved by FDA for treatment for people who can't taper with PMR and he had not heard of it; seeming more concerned about its expense than me? I am Canadian ... can you help me.
Replies to "I am really struggling with tapering and hoping someone can shed some light on my situation...."
I think a rheumatologist will be much more knowledgeable and able to help you. Hoping for relief for you.
Janettec;
Definitely see a rheumatologist. My concern is new drugs… how long have they been on trials??? Would like to read data
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I am not normal, atypical, non classic…..lots of other words like that. My rheumatologist uses these terms to indicate that my PMR symptoms are different than most others. Except they aren’t. Not really. There really isn’t a garden variety PMR and I wish docs would stop looking for one and locking in one set of symptoms as being typical. Like you, My pain is in my thighs and hips. My CPR was at 113. It’s now normal but my SED remains high around 50. I have been on prednisone since December and can’t get below 25mg without a major flare. Methotrexate added but only on it a month so far so not really helping yet. Probably at 3 to 6 months. Doc is ramping it up though and I start doing 25mg of the Metho along with trying to begin again to taper the prednisone down. As many here have said a slow taper is the only way to do it. My next taper is from 25mg to 22.5. I think small, more subtle tapers works best.