[Helen Robinson]

Hi Meg

Your poor father certainly is having troubles. I wanted to comment re your fear of long term prednisone use. Even though it can have some unpleasant side effects it is often the only thing of use. My husband needed to start it after he develeped polymyalgia rheumatica shortly after his MDS diagnosis. He tried reducing the dose but it was very hard to go below 10 mg. After four years the PMR subsided and he now has to begin reducing the prednisone further but very slowly or risk a return of the PMR. He reduces by 0.5mg every two weeks. He has osteoporosis from the pred but he would have been crippled without it.

This disease requires a rapid learning curve and perhaps you need to ask your father's doctor many questions to try and understand what is happening. the MDS would reduce his immunity, hence the infections but what is the cause?

I hope this rambling does not confuse you even further.
Best wishes, Helen