I thought I should tell you a little of my journey with PMR because I was not treated with the “traditional” amounts of prednisone.
When I started on prednisone my arms and shoulders were agony to any touch and very weak. I had been suffering with undiagnosed leg issues for 10 years. Problems walking any great distance, doing stairs, getting in and out of vehicles. Upper body was too painful to sleep in a bed. I slept in a lounge chair.
I’m one of those individual with raised inflammation markers. My ESR/CRP levels and Prednisone at the start of treatment were:
20 mg March 11/14 41/169.9
25 mg March 14/14 78/43.1
40 mg March 18/14 15/0.4
I had some relief at 20 mg, perhaps 30%. The increase to 25 mg a few days later helped a bit more, but I had a complete melt down with pain on March 18 with increased weakness and pain encompassing my neck and upper back. I couldn’t lift a single dinner plate into the cupboard. I couldn’t get in and out of my sleeping chair without help. Toileting and dressing were agony. I was ready for a walker, raised toilet seat, and homecare. Twelve hours after increasing to 40 mg and I was pain free! Felt better than I had in 10 years! A new woman. And it happened on my 65th birthday!
Unfortunately, I was tapered down too far too fast and had a relapse 2 months later. I had to return to 40 mg, but never returned to the euphoric pain free me. My lead legs came back and I’m living with them again. But that’s another story. I have now tapered to 14 mg and am hopeful that I will be able to continue with gradual drops. Over the last year of tapering my ESR has ranged between 9 and 12; and CRP 1.3 to 4.6. Although my ESR reading last week was 6, it’s still in the normal range.
The fact that it took 40 mg to get things under control has worried me on many occasions. Particularly when Eileen suggests that if things aren’t controlled at 15 or 20 mg, it may not be PMR. I respect Eileen’s opinions and value her input and recommendations more than any medical practitioner I have dealt with re: PMR. However, I read all of the forums regularly and based on comments by Eileen and other sage advisors, I believe that several things MAY have dictated my need for higher levels of prednisone. First, the issues I’ve had with my legs for 10 years was determined to be undiagnosed PMR. So, PMR already had a good hold on me. Second, the significant and painful involvement of my neck and shoulders may indicate that GCA, without temporal involvement, may have been lurking, and lastly, I was about 40 pounds overweight on diagnosis. All of these things may have resulted in a need for a 40 mg start. My symptoms were, and are, so typically PMR.
Just thought I’d share my experience. We are all so different. Of course I have all the wonderful side effects…moon face, thick neck, widow’s hump, sensitive teeth, weight gain, fatigue, fuzzy brain………..
It’s all good though. I’m enjoying life as best I can. 