My doctor's office has a poster on the wall numbered 1-10, with a smiley face on the bottom (1) and a crying, frowning face on top (10). I'm always asked to rate my pain and find that so hard to do, especially since I feel more or less at different times of the day. So now she has me keeping a daily journal and I find it's interesting that there's no rhyme or reason as to why I'll feel like a 2 one morning and a 4-5 the next. Amount of sleep or activity levels or stress......it doesn't seem to matter.
Is this to be expected when tapering down the Prednisone? Within 3 weeks I went from 40 to 30 to 20mg (and feeling good) to 10mg and then back up to 15mg when symptoms returned big time. Now she's decreasing by 1mg per week and some days I'm flat out miserable. Is this as good as it gets.....as long as I can get in and out of a chair again, should I be satisfied?
I don't know another soul who has P.R., so am happy to have found this group and answers to my questions! Many thanks to all who post here :o)
Judy
Hi Judy, Interesting to hear about the journal. I will try and keep one just to see how my smiley and frowning faces look too. I will let you know! I do not know anyone personally with PMR or who had heard of it either. Sure makes it hard to tell someone what you have wrong, especially when you have so many unanswered questions. Being able to read and communicate this way is a godsend!
In answer to your question... is this as good as it gets? No, it can be better!!!!Your Dr appears to be quite aggressive in dropping your pred. dosage, maybe by too much, too soon? I have been on 10mg pred for nearly 10 months, except for a 2 week period of 10mg one day the 7.5 the next. ESR & CRP blood tests were up again and I was miserable and in pain, so back to 10mg daily. Flare-ups still seem to happen for no reason, maybe some of it is pred. side effects mixed with PMR? I hope you have a Dr you can talk too and maybe suggest staying at a comfortable level of pred a little longer for sanity sake as well as comfort. Best wishes,
Hi Judi and LynM , I'm experiencing the same frustration as you are. My rheum did say that I might feel bad for a few days as I continue to drop 1 mg a month. I'm now at 8. Today is an awful day. I've also tried in vain to find a pattern, rhyme or reason for good and bad days. So far, I'm not letting it get me down, but some days my emotional state is at 10.
My doctor says the ususal treatment is 1 and 1/2 years. All their patients have been well in that time except two. One took 2 1/2 years, and the other relapsed after a time. They are a very, very busy office treating many patients, so hopefully we will fall within the majority range and be pain free again some day.
As I understand it, LynM, you are correct in that the symtoms of the disease AND the prednisone withdrawal are the same, so it could be 6 months after we're completely off treatment before we will know for sure. It's a really hateful thing to have, and I don't know anyone besides me who has it either. Very few people have even heard of it. I love to read what you guys have to say. It makes me feel not so alone.
Betsy, Lynn and Judy.