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?
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.
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.
So sorry for your families PMR troubles. I wonder if some families are predisposed to PMR, and why? And yes, I was in quite a lot of pain in the beginning. Pred helped immensely.
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.
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.
If by " Has anyone had this severe a case?" you mean being unable to get off the toilet, unable to walk up stairs etc - yes, probably quite a few of us! One lady was in bed for nearly a year and had to have ambulance transport to get to hospital appointments.
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?😏
How is this diagnosed?
Thank you for all your helpful comments! I really appreciate this forum. And CRP autocorrected to crap😂
By her symptoms and her blood work. Her CRP was very high.
Thank goodness I’m not the only one so bad! ( tho obvs I wish neither of us were) ; often I read people on the forum saying they’re having a bad day or a flare, then saying they had taken the dog for a walk or decorated the living room! When I’m bad I have to sleep in a chair, as for walking I find the 20 steps to the bathroom like a marathon. Holding my phone is agony!
I see.. ive been having really strange vision problems and my crp and ear are slightly elevated and they are wondering why.
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????????
What sort of visual problems - and any other symptoms? How old ar eyou?
Thank you for your comments, Eileen! I have gotten my sister to join this forum because of the support, encouragement and hope it offers! She has had such a rough start with PMR and I have been so worried about her. Fortunately, her doctors seem very up to date on this disease. She is staying on 20mg for another month! I’ve told her about the dsns method of reduction which has worked so well for me. I’m down to 3mg! Yay!!
That's a success story - you'll be able to coach your sister!
All these replies are so helpful. I don't feel so alone.
Hi twopies, I am interested in your story, I am really glad for you to be down to 6, what hope that gives.
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?
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.