I wonder why PMR patients need to take prednisone and RA patients take things like plaquenel which is less dangerous to the body yet supposedly does the same thing ? both are immune system suppressants and anti inflammitory.
I will have to ask my doctor. or...does anyone know why? I have been on plaq for 1 week now and my hands seem definately less stiff and painful.
Marianne,
My husband just got back from Mayo clinic. He spent 4 days at the clinic. They gave him a complete physical, had his vision checked, his heart and lungs checked. They gave him a colonoscopy, and endoscopy, and checked his kidneys, did a bone scan and did extensive blood work.
He has been on prednisone since Nov. of 2005. He had been doing fairly well until this spring when the doctor lowered his prednisone from 20 mg to 10 mg. This really thru him into a flare and he started going downhill fast. We requested a second opinion at Mayo which made the primary doctor mad. This is what we found out: His blurred vision was not a result of the prednisone but dry eyes. Besides the drops in the AM they added drops at bedtime which has helped. The prednisone has caused some bone loss. He was still normal but on the low end. They put him on two caplets of Citracal with Vitamin D per day. They said that this works just as well as the presciption meds. They also found a bleeding ulcer in the stomach that caused him to lose 5 pts. of blood. This accounted for the extreme tiredness. The biopsy came back non cancerous and was not caused by bacteria but was caused by the prednisone. For this he got a prescription. They also put him on Vitron C, a high potency iron supplement that was again not a prescription but off the shelf. They are also weaning him off the prednisone very slowly.
They said that prednisone is the only med that really works for all who have PMR and temporal arteritis. They said that some of the others meds work for some but not all and it is a trial and error type of thing. He uses Tylenol on the bad days which they were pleased about. They seem to think that it causes less problems than some of the other pain relievers. They also made the statement that most people are over this dreaded disease in about 3 years. From what I have read here on the forum that is not necessarily true.
We were amazed that they prescribed over the counter meds where available and are very receptive to alternative medicines. I had gotten some information on Avemar, a fermented wheat germ product from Hungary that they use to help cancer patients and that they have also found helps those who have immune diseases and started husband on it the end of April. His purple arms are slowly returning to a normal color. Mayo was very interested in this product.
We are now hunting for a new primary doctor. After the mistake he made in lowering the pred we 'google' everything. If he hadn't been so hung up on the cholesterol thing maybe he would have noticed that the hemogoblin was dropping like a rock.
Kathy
This doesn't have anything to do with the disease on this forum but I have been having CT scans of nodules on my lungs. They recently went up very slightly and devloped new ones. They did a PET scan and said that they lite up and there was a 95% it was cancer. They said I needed a needle biopsy which is very tricky for anyone with severe emphysema which I do.