Carol
Hi Shar: Have had this disease since March 2001 and am on Prednisone..dose has been changed so many times it is hard to keep up with it--started at 40 mg a day, and that put me in the hospital with heart problems....have been on 30 mg. and tried to taper it down...25 did fairly well, but am now at 20 and starting to feel the aches, pains and fever, along with tender scalp all over again. The doctor started me on Placquenil to see if that would help in being able to lower the dose further, but it will take at least a month for that to show any effect, I am told. Many here say that they still are suffering with this years past the 2-3 yr. stated duration of symptoms till it "burns itself out". At the rate I am going, I will be on Prednisone for a very long time. I am 57 and this has been the most debilitating illness I have had in my life. I also tested positive with Epstein Barr Virus when I was in the hospital in March with an elevated titer, so I could be dealing with two seperate things...hard to tell at times which is which. Good luck to you.