Hi all, I have just joined this site, as I too suffer from Polymyalgia Rheumatica. Seems a lot of you have been suffering with this pain for many years. I was diagnosed seven months ago. For my Dr it was an unusual case for him, and as he said a challenge. He was spot on with his diagnoses though.I was started off on 25ml prednisolone, and after two tablets was pain free. Slowly over many months I have been weaned down to a lower dose, and the pain has come back full force again. I am on 4ml at the moment. Today is a really good day. Last night instead of a shower I had a bath, and threw a few handfuls of bath salts in, then took two neurofen tablets, which I had not had before. Wish this could be the answer to being pain free!! Best day for ages. Sorry to see so many of you suffer with even more complications. Kind regards, aussieg.
A Canadian Hi- So glad you are making progress. Last May I began having symptoms for the first time and assciated the arm pain with poor golf swing and the groin pain with possibly hitting the ground and not the golf ball! Whne SED rate reached 91 , something else rather than golf was the culprit. Entered the world of PMR!... Like you, I am now at 4mg and come off the prednisone one mg per month. For the first time I tried old dose new dose method suggested elsewhere on this site ..worked well..previously I used to have two weeks of a lot of discomfort before I got to a more stable time with periodic bouts of pain or fatique/weakness during the day. I am attempting to keep up exercising...wonder if that is wise or not... bothered still by bouts of fatigue during the day and usually have three of so of what I call episodes of pain particularly in my arms .. pain can move occasionally to the base of my spine or rarer still to mid back..thought..hoped prednisone would be the answer..think it only helps..a great deal but not completely. ..also upped Vitamin D to 4000 recently ...can't tell if that has made any difference..take calcium to protect bones..feel stronger as time goes on..returned to curling and felt much stronger than prior to our annual wintering away..any tips from any one as to what is helpful at this stage? I was dx last September, prettry soon (like 2 months) after first symptoms which came on virtually overnight. Sed of 83, neg for RA. 20 mg pred worked after a few days. I'm now on 5 and it is holding well except for some pain in my left bicep. Developed Raynaud's this winter and may be having some scleroderma problems as I have had ulcers in feet that won't heal. Can't walk more than a block without cramping. Two episodes of zig-zag flashes in eyes. Can't get into the rheumatologist until June, so I'm trying to hold it all together. Sorry, I'm whining. Feels good to know you guys, at least, know what I'm talking about. Hello Elizabeth, your mention of zig - zag flashes in eyes has got my interest. I used to get them quite often and was told by my optician that is a
----- migraine. Its been 6 months between flashes until a couple of days ago when I had it in my Left eye for about 30 minutes. I had a temporal artery biopsy done last year and it came back inconclusive.. in other words ' don't know '!
Have you has these zig zags before? Often? have you told your Dr?
Once again I see another PMR suffer on a very low dose Pred. I was still at 10mg a year later after a short trial of 7.5mg. I do hope your visit with a Rheumy will get you on better management of PMR. It will nearly be June the way this year is flying along!!
You are not whining, never feel you are doing that on here... we really do understand your frustration and pain!!!
Gentle hugs, Lyn
Thanks, Lyn. I'm concerned, of course, that the zig-zag stuff is a precurser of GCA, but almost relieved to think it may just be migranes (which I have never had). I've only had the zig-zag once before, last December, I think. I've been wondering if I should increase pred to 10mg. I have been so pleased that 5mg was 'holding' me, but maybe it really isn't. I'll just try to get along 'til June. Sure hope I get a good rheumy. My internist has referred me to University of California at Davis (med school) rheumatology dept. I'm excited to think they will know a lot about this and have some suggestions for me. Getting old sucks big time! Thanks for your caring. ElizabethHi luckycauk. Well, my one day was all I was going to have pain free. I have crashed big time. I see my Dr this Friday. I am back to where I was seven months ago, which means I have a lot of pain again. For me , and I would imagine , most of us, it is the frustration of not being able to do the simple things most people take for granted, without a lot of pain involved.I have always been very active so I find this hard to deal with at times.I had to give up my one day at the gym, as I knew I would not be able to cope. Getting up and down is the worst!! I do go line dancing though. I started this 2 years ago, and I love doing this. I can take a break when I feel like it. Helps you to forget the pain when you are dancing. Good music, good people. Well that's enough from me. Kind regards, aussieg
Hi Elizabeth, I have been trying to check out the name of the migraine I was told but I cannot find it!! Like you I do not get migraines either.
I am still concerned that you should see your Dr for a check and maybe if this is the same Dr that has you started on Pred, then maybe he/she could up it now and not wait until June.. or alternative add in a pain med?
Hope today is better,
gentle hugs, Lyn A year ago I was on the treadmill 6 days a week, Pilates 3 days a week. My legs cramp so that I haven't been able to do the treadmill in some months and I miss it terribly. But the Pilates has kept me going and kept me sane. I know that exercise helps keep our immune system functioning, so do what you can when you can. Good luck. Elizabeth, you should see a opthamologist for your flashes asap. It could be a torn retina.
Copyright ArthritisInsight.com