im a 51 year old man who woke up one morning with bad shoulder pains , and could not bend as i had severe pain in lower back and left hip,i have had pillow sweats , went to the doc who did blood tests and my levels are raised . i have lost 2 stone in weight.he started me in 20 mg og pred but has reduced me to 10 and now 5 mg over 2 weeks, i see the consultant next week and by then he wants me down to zero. the major problem is that i am worst in the morning ,when i take my pred at 8.00 it takes until lunchtime to be able to bend down , is this normal. in the aft im relatively ok but am am tired after doing ang activities.
thks for listening
Hi Phil, I'm a first timer on the message board. I'm 66 and was diagnosed after many months of pain and barely being able to get out of bed in the mornings. My PMR appeared about a month after my husband died. I never heard of it before. Some think there's a stress connection.
I don't mean to sound negative or whiney, but my life is totally messed up even though I fight the PMR with all my might. I'm down to 10 mg prednisone from 20 starting in Feb. It's very helpful in my case, but I still have some pain. I'd rather have a little pain and a little prednnisone.
All I've ever read about PMR says it will go away in 2 to 4 years. Yet there seem to be lots of people on the message boards who haven't found that to be true. I just hope all the "cured" ones are too busy having great lives to have time to post anymore.
Hi B Rich and Philip,
B Rich, I agree with you, the PMR pts that no longer have symptoms are doing their normal, daily activities again and don't have time for computer stuff.
My family doc, (I love her) said this will go away and it is typical to last 2-4 years. She also mentioned my strong constitution to not give into it will help....and I am ok with having a little pain and a little prednisone..like you B Rich
Philip, when mine hit, I could not move my legs in bed, and needed help getting out of bed. I thought that I had pulled both hamstrings...which is unheard of...then it moved to my shoulders and neck...couldn't turn my head to look at the clock...couldn't put on shoes, socks, bend to the floor.....nothing.....and then prednisone...I was better, but I was on it for only 40 days with a taper every 10 days. When I was off the pred. my symptons were back!!! My rheum dr. was treating something else, then realized it was PMR because I responded so well to the pred, he was able to determine it was PMR...sed rate elevated, crp elevated and plateletts....so now I am on a longer taper...........from what I have read and have been told, that is the way to go..
Sorry for the novel, however, I have found comfort and encouragement from these boards and would like to pass it on...
Stay postivie and keep the knowledge that it won't last and you will feel better soon.
Puffy------aka Janet
Hi, Philip!Philip:
Prednisone is the key player for PMR. Sounds like your Dr. is too quick to taper you down. Mine put me on 15mg/day and had me stay there for a couple of weeks. I have found for myself that I need 18mg./day to function fairly nromally. I have also started on Methotrexate which -in theory- is supposed to help 'spare' the amount of prednisone needed to control symptoms. When you taper- I recommend that you taper in 1/2 to 1 mg. increments and do it for a week then down some more- if you tolerate it.
The PMR sufferer can finely tune the prednisone if you pay close attention to your response to the taper. The doctor doesn't live in your body and may want to taper too quickly for your tolerance level.
Rosey
im sorry for posting on here here , thought i had pmr , but it now turns out i have r a and im being put on sulfa , my shoulders are sheer hell my fingers ache , i dread sleeping as when i wake up the pain is terrible , but i have to say it is the fatigue and tiredness that really affects me , my wife is very tolerant but its the feeling of not being in control . one minute i feel ok the next i want to rest.
regards philip
Hi, Philip!