Hello all,
I want to join the long list of everyone here who appreciates Mrs. E, Mrs. UK, and all the wonderful folks struggling with PMR. It's such a confusing disease with not a lot of information out there. I read EVERYTHING you all write and even if it's lengthy or repeated, sometime it's good just to read it again and feel all the support here.
I was at 9 mg. (finally), was having a really tough time with the pain, so went up to 15 mg. Relief, but not enough. So after reading one of Mrs. E's posts, I went up to 16 mg. Better, but still not super. I know I have asked this question before, but I guess my foggy brain doesn't understand. Is the prednisone supposed to get rid of the pain ENTIRELY? I am way better than when this first began 16 months ago, but really not "normal" feeling. I camped with friends a couple of weeks ago and we walked around the lake. This was in lieu of a 5 mile hike that would have taken place if their PMR friend wasn't with them. Even with just the short hike, I was struggling and barely made it. Took days to recover! That's when I went up to 16 mg. Now school has started and I'm teaching 1/2 time again, so I need to feel good. (but really don't we all?!) I felt really good on 20 mg.of prednison, but I'm sure my rheumy won't go for that!
I hope this isn't too long of a post and that my question didn't get lost in there somewhere. Hope you all are doing well today.
"Life isn't about waiting for the storm to pass--it's about learning to dance in the rain."
Gentle hugs,
JannieJannie, I'd like to hear an answer to your question also, since it's one I have wondered about frequently!
I didn't want to waste space with a non-answer but at least this will serve to keep your post bumped up so it won't get lost in the shuffle.
freesia
Jannie
"Is the prednisone supposed to get rid of the pain ENTIRELY?"
After listening and talking to PMR people the answer seems to be NO, it just makes it 'livable with'.
I know you have probably been there but if you read 'Our stories' on www.pmr-gca-northeast.org.uk you might find something to help there. Also under Useful Information there are BSR guidelines to diagnosis and treatment.
I am not surprised you felt dreadful and took days to recover. PMR comes along with fatigue et al. It is a question of learning to go with the flow. The aim with pred is to get to a low dose where you are comfortable and able to live your life, albeit altered, not the same as before.
Pred does not cure, nothing does at present. Hope this all helps and hope I don't get shouted at as EileenH did.
Mrs. UK
If anyone shouts at you, they will have to contend with the rest of us who love you. If I didn't have this forum and all the answers (long and short!), I don't think I would be able to deal with this disease. I, for one, know I ask some of the same questions again and again. And sometimes I need to hear the same answers again and again until I get it through my head what I need to hear.
Thanks for your response. I guess I just have wishful thinking that the prednisone will make me feel normal again and that I'll be able to do all the things I did before AND with all the energy I had before. Last summer, I wasn't able to camp at all. This summer, I camped and had a great time. It was worth the recovery period. I will continue to focus on what I can do, rather than what I can't.
Gentle Hugs,
JannieMonatanwoman
We all live in hope that we can get back 90% of what we have lost.
Your post jogged my memory - My mother (who had PMR and GCA, arthritis both kinds) used to say - do want you want to and pay for it afterwards. At least you have enjoyed doing it and you get through the payback. Never a truer word spoken as I have found out over the past five years.
Have a good time and remember to laugh at the things you can't do and find somebody else to do them - yippee.
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