I was first diagonosed with T cell in April of 2004, after I had my spleen removed. Was treated with methotrexate and prednisone for the first six months, then methotrexate alone for the next 6 months. I was tired all the time, had mouth sores, joint pain and general just didn't feel well. The disease was what they call "Quiet" for most of 2005 and 2006, but acted up again in December of 2006. In February of 2007, I was put on Cyclosporine(Gengraf) with prednisone, and am still on it. In Ferbruary of this year, I had my first real issue with having a suppressed immune system. I was hospitalized with pneumonia for 8 days. But have recoverd well. Unfortuantely, my neutrophils are only at about 520, so I have had a bone marrow test and may have to revise my treatment plan. In between all this, the medication has caused my blodd pressure to elevate and I have had to motior my blood sugar. For the most part I feel good, but i get tired and my joints and muscles ache often. Ihave gotten used to a lot of it and thankfully have missed a minimal amount of work. The disease itslef is not life threatening, it's not having a fully functioning immune system that is the bad part. By the way, I am currently 58 years old, and if I follow the doctors orders, he sees no reason why i shouldn't live a long and productive life.
You and your family will be in my prayers. It may be a rare disease, but you are not alone.