It's been a while since I last posted something. Maybe three months. During that time I managed to taper from 30 mg down to 6 with no symptoms. I was really thinking that maybe this disease had gone away. But then, a few days after I went down to 5 mg, my symptoms started returning. After two weeks at 5 mg they were getting worse, so today I decided to go back up. I took 7 mg this morning and then will go down to 6 mg tomorrow and stay there for a month. Then go to 5.5 and see what happens.
My two questions:
1. Does this taper schedule make sense? Any advice?
2. Can I call myself a PMR veteran now? I've had this disease since January, and I found my lowest dose the hard way.
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sferios
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This link contains usual advice for dealing with a flare - it's usually best to hit it hard, then once back under control you can drop down to just above the dose that was too low..
Quick question. In your article, where you talk about flares, you say this: "either you have reduced too low or you are too active for your medication to control the illness." What do you mean by "too active?" Do you mean that if you exercise or are more active than you might need to up the pred dose?
What is the relationship between pred and physical activity?
You need to exercise, but PMR affected muscles take longer to recover and certainly don’t like repetitive actions. So doing normal household chores , gardening, playing a round of golf, cycling or even just walking - you need to build in time to recuperate.
it is not a good idea to ‘up the dose of Pred’ on a regular basis to enable you to do those activities you need to learn to accommodate your PMR - and adjust your activities according. Doesn’t mean you cannot do things, but you do need to pace yourself.
Yes. I think they had me on too high a dose at the beginning. I had elevated CK levels and so the E.R. doc thought I had myositis, which requires a higher dose than PMR. Then they referred me to the rheumy, who I saw three weeks later. So I was three weeks on 40 mg, and the rheumy says to me, "this looks more like PMR than myositis to me," and she told me to reduce my dose 5 mg per week. Well, when I got down to 25 mg, I had symptoms again. And when I got down tot 20, I hurt so much I could barely walk. So I went back up to 30 mg, where I stayed for a while.
Only then did I find this forum and learn about prednisone. The taper was too fast.
So my theory is that I never needed to be on such a high dose, and when I tapered recently down to 6, I did it much more slowly and so it worked.
However, there's another possibility, and that is that I don't actually have PMR. My local rheumy has never definitely diagnosed me, because even though the symptoms match, I also had elevated CK levels, which doesn't happen with PMR. She thinks I have a "vaccine-induced PMR-presenting autoimmune myalgia ."
Then, I went to the Mayo Clinic in April to get a second opinion, and the rheumy there basically said the same thing my local rheumy said. Specifically, he said I have a new type of autoimmune myositis induced by the mRNA vaccines. He said they are seeing it all over the world, that it presents differently in different people, but that it is not PMR, despite having similar symptoms. He said my body produced auto-antibodies for my bursa and muscles. They haven't identified the specific auto-antibody yet, but research is underway to find it (or more than one).
So if my two rheumy's are correct, then it's possible the auto-antibodies are fading, just like the good antibodies fade after about six months.
I have to say, I still don't know what to believe. But that's my story.
If the cause was the vaccine - which I am not doubting it will be very difficult for anyone to really know what they are doing. MS (multiple sclerosis) is also thought to be caused by the vaccine in some people recently. I started on this journey with PMR/GCA about 6 years ago and have discovered pains of reducing too quickly and doing too much physically (worry doesn't help either!). Thanks to this forum and all the knowledge I am doing better but not quite there yet. I wish you the best of luck and advise not to be in too much of a hurry - it takes as long as it takes.
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Is Occipital neuralgia part of GCA
Can I apologise in advance...
I'm new here and I have a question
