Hello all
I just happened upon this forum while searching for updated info on PMR. I was diagnosed last August (following a variety of treatment and tests) although I'm pretty sure it began sometime in Jan. last year when I suddenly realized I could no longer bend! I fence for a hobby and thought I had simply over worked myself. When it continued I went to my doc. who eventually referred me to a neurologist who diagnosed PMR and started me on Pred.(which worked wonders in a matter of 3 days!) My rheumatologist has wanted me to begin metatrexate but I have railed against using it (side effects). I told my rheumatologist I would reduce the pred on a slower basis. by the time I got to 7mg I was a bit stiff but ok. I went to six and found pain to be keeping me up at nightand went back to 7. Now I'm back to 6 and dealing with whatever pain I have (at time excruciating) determined not to go back up. My question is whether or not anyone here is now med and symptom free following the reported 2-3 year length of the disease?
Thanks
Fencer,
I am med free and PMR symptom free, but it took me a "good" 5 years to get over it. Don't mean to sound discouraging, but I don't think the articles that say 2-3 years are very accurate. So many people on this forum are having PMR for a lot longer. But, I am living proof that it does go away. I have been med free for a couple of years now; I just got tired of taking all the cr-- and quit. My rheumy was very understanding. He called it a "medication vacation". I figured I'd put up with the aches just to be free of all the med side-effects, and by that time they weren't as bad as when I was first diagnosed. Thankfully it's all done now.
Fencer,
Welcome! You don't say what dose of pred you started on, or how quickly
you reduced. You will find many here end up going back up several times as
they reduce dosages. Some tolerable pain as you trduce can be expected,
but remember that being in excrutiating pain can also lead to more
exhaustion and depression and reduced ability. Think about going bakc to
dose that takes the pain down a level for a time and then reducing again
more slowly.
In the meantime, hoping you feel better over the weekend,
pgrHi fencer, I was diagnoised in April of this year with PMR. Thankgoodness for the computer. The Dr didn't give me much information on it. I started on 10 mg, 5mg in the morning of prednsone and 5mg in the afternoon. Then I cut the 5 in half for morning and afternoon. When he had me cut the afternoon out everyother day, it was too much the pain came back. After my ups and downs with pred, I am now on 5mg in the morning, taking 2,000 mg of vit C and have cut out sugar from my diet, trying the anti inflamatory diet, and am feel better. I was just wanting to sleep all the time. Please keep us posted and read through all the stuff on this anti inflamatory diet, it is good information. Geri
Fencer,
I'm new on the forum with diagnosis of PMR since February, but symptoms were present since May.
I was told it could be a disease with a duration of 2 to 5 years by my rhemy. Hoping it does not last that long. I'm back up on the Medrol dosage starting another taper. I'm more concerned with comfort and quality of life at this point, and will do the regimen, slowly.
It's worse to do the fast track, and then end up going back up and still miserable to boot.
I've recently had another antiinflammatory added to the pill regimen, to help with the pain from inflammation.
Donna, NY
Hi Fencer.
I had PMR (at age 49) for 2 years. it went away for 3 years than came back in much milder form. I took plaquenel for a few weeks. Now am totlaly drug and pain free.
wish you well.
Marianne
Hi fencer, wish I were on 7! 7mg is my aim. I'm currently on 8 1/2. Have you tried 6 1/2? You may well find you do well on that for a while. I', a big fan of 1/2mgs!!My husband has been dropping from 15 mg at a half mg about every two weeks. He has about three days after the drop where he drags around a bit and then it goes away and he is ok until the next drop in pred. The continuous rain and overcast days we are having in the midwest do not help. I don't think he could handle any bigger drops.
I have noticed several of you have commented on the bruises on your arms or some part of your body. Hubby's bruises are always on his arms. They were a solid dark purple. In April I ordered some "Ave" (In Europe it is called Avemar) It took about six weeks before we noticed any difference and then the color started to fade and his arms are almost back to a normal color. Avemar is used in Europe as a supplement cancer treatment and they have discovered that it also helps some immune system problems. We figured it was worth a try. You can get more information by googling Avemar.
Epicor is a product in the same line (fermented yeast culture) that is manufactured in Cedar Rapids. It was originally made for an animal supplement when the company discovered that they had very few health claims from the people that worked in the manufacturing end of their plant compared to those that worked in the office. This lead to a refinement of their product and a new company that sells the supplement for human consumption.
Bob, Hubby liked the drunken sailor bit better than the waddling duck. Guess if one is from the midwest we don't see too many drunken sailors!
Cap, How about a drunken farmer walking across a newly plowed field? That should fit the midwest better.
I know how he feels. I walk the same way when I get up until I'm a bit limbered. Invite him up on the aft deck for a smoke and a bit of grog.