My two sister and I have all been diagnosed with PMR.
Posted , 15 users are following.
My older sister was diagnosed ten years ago, and is totally over it, I was diagnosed in 2015 and am down to 3 mg of prednisone daily. Just last October my other sister was diagnosed. She has had a terrible time. She was visiting me and had a terrible attack where she couldn’t walk, couldn’t get off the toilet, had terrible pain in her knees. She ended up going to the hospital and they upped her prednisone to 20 mg daily. Her crap was 33. She has terrible fatigue, as well. I told her about this forum but she hasn’t joined yet. Has anyone had this severe a case?
1 like, 22 replies
jean39702 rrobinson75
Posted
At my lowest point prior to diagnosis, I couldn't lie down due to upper body pain and had been sleeping in a lounge chair for two weeks. I had to have help getting dressed, struggled with terrible pain getting on and off the toilet, needed help rising from a seated position and couldn't lift a dinner plate into the cupboard.... So, the answer is yes. At that time my CRP was 169.9 and ESR 78.
aileen1955 jean39702
Posted
EileenH aileen1955
Posted
I never had to sleep in a chair - there wasn't one that would have helped anyway! I did crawl up the stairs on hands and knees. I can still remember taking the first 3 tablets in hope - and the miracle 6 hours later.
But yes - when someone complains they can't walk 3 miles any more or lay carpets (Yes, I've heard that!) I have to think WTF????????
rrobinson75 EileenH
Posted
EileenH rrobinson75
Posted
That's a success story - you'll be able to coach your sister!
Twopies rrobinson75
Posted
I would say yes. I was diagnosed in sept 2016; couldn't roll over in bed without help, couldn't get out of bed, on or off the toilet, couldn't get dressed without help, almost screaming with pain in hips, legs, shoulders and arms. Got some relief after 3 days of 20 mg. prednisone. Currently at 6 mg., using dsns method. I am never pain free now, but soooo much better than I was.
margot34956 Twopies
Posted
I was diagnosed in November last year so have so much yet to learn, so my question is , now you are on 6mg and are never pain free, does that mean the inflammation is still there?
EileenH margot34956
Posted
The potential for the inflammation is always there - the pred doesn't cure it. It mops up the new daily dose of inflammation caused by the release of inflammatory substances in the early morning.
Think of a bucket full of an inflammatory liquid: you clear it all out with your starting dose but there is a tap dripping more into it every day. If you don't clear it all out again each day it slowly fills up and eventually will overflow. If there is a tablespoon-worth of liquid dripping in and you use a teaspoon to scoop out some you will find the level in the bucket rising.. Use a tablespoon to do the scooping it won't.
Twopies margot34956
Posted
I would say yes, some days better than others. I know one other person who has pmr, she told me, "if you move one day, you won't move the next." I have found that to be largely true (although I do try to move every day). She has had it for 14 years, now at 1 mg., was at 1/2, but had to go back up. She told me the first two years are the hardest--I'm hoping that's true for me. My soreness and stiffness gets better around 3:00 p.m.; I've tried split dose (whic my gp actually recommended) but need to play with it some more, it seemed like the 4 mg in the morning didn't get me through till evening. I don't sleep. Some days the fatigue is so bad I can barely get into bed. But: hope springs eternal!!! When my cortisol levels reset, I will be off and running again!
margot34956 EileenH
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margot34956 Twopies
Posted
My soreness and stiffness is better in the evening.
14 years is such a long time, I do wonder how people do keep strong for such a long time. getting down to 1mg must have been so nice for her. what a shame she had to go back up.
it does sound like she is getting there. I hope she does.
Anniecurd rrobinson75
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MR._BELLA rrobinson75
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Yes, my knees have been so bad i can't get up without using a crutch. My CRP has never been above 3.6. Are you sure it was CRP because you said "crap". When my knees got that bad i raised my Pred from 15 to 17.5 and am still there. I think when i lowered from 17.5 to 15 i went in to a flare and that caused my knee pain.
constance.de MR._BELLA
Posted
I’m sure CRP was meant, but I alway refer to it as “crap” - well it is a crappy illness we have because of the inflammation, isn’t it?😏
Anhaga rrobinson75
Posted
Unfortunately many people do have this amount of pain and disability. I was heading that way but it had built up very slowly over a number of months, probably because until all this happened i'd been in good health and had a fairly active job which kept me fit. Nevertheless prednisone should work its miracles just as well for someone in this state as for those who aren't in such dire straits.
Yes, autoimmune disorders do seem to run in families, although individuals may not all come down with the same one. Whether this demonstrates genetic predisposition or a common environmental factor, or maybe both, I don't know.