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2 year struggle to get off prednisone still hard to get from 3 to 2mg
Polymyalgia Rheumatica (PMR) | Last Active: May 15 9:20am | Replies (39)Comment receiving replies
Do you know what triggered the PM, in the first place? In my case, I had lots of pain all over, and in hot spots, but the PM began from an allergy to cold, and it was all over. I know they tell us that Prednisone is the only real treatment for PM, but in my case I couldn't get down much below 20 mg and put on 90 lbs. among other ugly side effects. I didn't even mind the moon face. It was a new PCP then who sat me down and told me she thought I'd need to just plain move out of Alaska. That was rough. Even rougher was moving out of AK. But the PM did go into remission. I arrived in the Lower 48 with 6 broken ribs and both feet broken. That's what high doses of Prednisone will do for you. Then, doctors wrote on my med records that I had abused steroids. No. It was me who stopped it all. Honestly, 3 mg seems so small to me. But then, I"m not the one living with what it does to you. We are all each so unique. Still, might you look back in your memories and find an odd allergy or trigger that began it all, and try to attack it from that angle? It did work for me. If I get stuck in the cold too long, the ole PM does try to roar back, but now I know to treat it with lots of warm, warmth, and avoid the cold again. It then goes back to sleep, every time. That only works because we now know what triggered it in the first place.
Replies to "Do you know what triggered the PM, in the first place? In my case, I had..."
Thanks for your response, no obvious cause other than I had a hip replacement about 16 months before diagnosis and had been through a very stressful time, like you I find heat helps and i have a heat pad for my shoulders and one for my lower back
Despite making changes to diet in terms of more protein and vegetables i didn't really find anything made much difference to managing the side effects except gritting my teeth and knowing I would struggle for 7-10 days every time I reduce
My face has retunred to pretty much normal my appearance had changed considerably and I still have weight to lose but appreciate this will take time as i reduce to nothing.
I live in Aotearoa New Zealand
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"Then, doctors wrote on my med records that I had abused steroids."
That's a shame your doctor phrased it like that. My primary care doctor listed my prednisone use as a "medical problem." That was confusing because I didn't understand how the treatment for PMR could be the problem until very late in the game when I was diagnosed with secondary adrenal insufficiency. It was a low cortisol level that caused me to be unable to taper off prednisone.
I had a long list of medical problems after my rheumatologist prescribed "long term" Prednisone. At the very top of my medical problem list was "long term and current use of prednisone." Then my primary care doctor quantified long term with the word "decades." I wasn't aware that prednisone was a big problem until I was on prednisone for about 10 years. I then told my primary care doctor that it was my rheumatologist's fault for prescribing long term prednisone to me.
My ophthalmologist introduced me to prednisone originally. However, my opthalmologist only prescribed 60-100 mg and told me taper as instructed. My instructions were to taper off as soon as I could. My ophthalmologist was so pleased with my ability to taper off prednisone that he made a notation that I was "skilled with prednisone tapers." I only needed a month or two to taper off Prednisone when it was used to treat uveitis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
My rheumatologist was the one who got me hooked on long term prednisone use for PMR. I was told that I wouldn't be able to taper off quickly and I would be on Prednisone for at least a year. It ended up being 12 years before I could taper off again.