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I think I have PMR and I’m terrified
I’m new on here because I guess I’m desperately seeking some comfort. I’m 58, active, keen cyclist doing 100 miles a week and live tennis. Then , five weeks ago I started the excruciating arm and shoulder pains. Did not even know what PMR was then and still didn’t really think I had PMR even when a friend told me to read up about it. I just thought it was some nerve issue.. anyway, long story short, went to rheumatologist today and he said 90% it’s PMR and will do the steroid test over next 4 days to get a confirmed diagnosis.
I’ve spent all night reading about this horrible condition and I’m filled with dread and a little despair. I have been very touched by reading some of the testimonies on this forum and I guess I’m just looking for some positive thoughts as I set out on this PMR journey that until a few weeks ago I never even imagined. I feel so stuck because I know the morning pain (which eases by afternoon but never goes away) is totally debilitating but I’m also very concerned about the side effects of the corticosteroids. Has anyone tried to battle it without taking the drugs? And if I have to take the steroids how bad are the side effects? I feel in a very dark place and feel as though I’ve suddenly gone from being a fit and young at heart 50 something to old age in a heartbeat :..
I’m sure once this settles in I’ll get to grips with it as I’ve managed some pretty tough times with a back surgery that went wrong but this feels so unknown and sinister. Apologies for being on the side of melodramatic but any positivity anyone whom is dealing with PMR can send my way would be very welcome… take care of yourselves
Martyn
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@kjoed53 thanks for that great advice yeah .. I guess it’s good to avoid knee jerk reactions.
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2 Reactions@martyn
It's essential when tapering because you will probably have a reaction to each decrease until your body adjusts. I've been lucky so far and I start 2.5mg tomorrow, still decreasing 0.5mg per week until my body says no or I hit 0.
@martyn I like that plan of tapering. If I had to do it all over, I would have started with a bare minimum (certainly not 40mg, more like 15mg/day) and added to it if necessary rather than start with a lot and guess taper down.
Keep us up to date on you progress. It will be helpful.
@kjoed53 @martyn
“ Your body will let you know how sensible it is. If you have initial increase in pain at a decrease, give it a few days to see if it subsides. If it does, then you're okay. If it doesn't, then listen to your body.”
Excellent advice. That’s really all we can do. You’ll experiment with yourself.
I’m an old science teacher so that’s why I say that.
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1 Reaction@stonewheel
At our age, it's somewhat ironic that we have to trust our body for prednisone tapering but can't always trust it to function properly... 😂
@stonewheel
None of what follows applies to PMR. I tried every taper trick that I knew attempting to taper off prednisone. It still took me 12 years after PMR was diagnosed before I was successful when a biologic was tried.
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I had a lot of practice treating flares of uveitis. For the first couple of flares, my ophthalmologist started with low dose and I worked my way up --- sometimes up to 100 mg. I quickly learned that 100 mg was my personal absolute limit and I informed my ophthalmologist I couldn't take any more than 100 mg. Fortunately 100 mg "got on top of uveitis flares" and I could start to taper lower.
Knowing that the above experience wasn't ideal, my ophthalmologist decided to try a different tactic for susequent uveitis flares. He wanted to "hit it hard" right from the start and Istarted with 60 mg. I was instructed to increase my dose if needed but 60 mg usually worked and I could taper lower. The problem I encountered was the progress made on 60 mg during the day was lost again overnight. I would make very little day-to-day progress until I split my dose. The progress I made during the day wasn't lost on a split dose. The inflammation would steadily decrease every day. Going from 60 mg back to zero in 30 days or less was something I did routinely for flares of uveitis.
Uveitis was interesting because both my ophthalmologist and I could see the inflammatory cells inside my eye. There are different types of floaters. Some are harmless but there other onesthat multiple rapidly. It made sense that inflammatory cells are called white blood cells because my vision would rapidly become foggy. I could watch a dense white fog roll in and that was how I knew I had a flare of uveitis.
Ophthalmologists actually grade the severity of uveitis using a slit-lamp microscope by counting these exact cells, measuring what they call "cell and flare"—where "flare" is the foggy, misty look caused by elevated protein levels, much like headlights shining through a heavy midnight fog.
Light flashes were another problem and I had those too. I would see fireworks out of the corner of my eye and reflexly run away. I felt foolish when someone else was with me. There was never an explosion and people with me never saw anything.