Mar 01, 2010 - 4:13 pm
I am a physician. Consequently, the literature on the subject of myeloproliferative diseases is known to me and understood. Unfortunately, in the prime of my medical practice, I was afflicted with both ulcerative colitis and a myeloproliferative disorder. Originally, because of an annual physical and a CBC which showed an elevated platelet count, I was diagnosed as essential thrombocytosis, which is a rather benign disorder when compared to its fellow proliferative marrow disorders. I took baby aspirin and Agrylin for about 6 months, but suffered from palpitations and an arrythmia, as a side effect to the drug. I then switched to Hydrea, which drove down the platelet count. About a year or so into the disease, my spleen began to enlarge, and this was the point at which the disease morphed into the more lethal myelofibrosis. I was fortunate enough to find an opening in a drug investigation, which was an FDA approved study of a JAK 2 inhibitor. While not curative, it seems to have improved my quality of life, although trying to stay active with a hemoglobin of 10.0 is very difficult. Thus, I sleep a lot, which has played havoc with my body muscle mass. I have lost 25 pounds as a result of the marrow disease and the colitis, and generally don't feel very well. Unfortunately one of the side effects of a JAK 2 inhibitor, at least the one I am taking, is a depressed platelet and red cell count. So, treatment is sort of a tradeoff - you are damned if you do and damned if you don't. The bone pain or periostitis is fairly well controlled with Aleve, one table taken about ever third day. I find that if I use it when the bone pain begins, rather than waiting until it is more severe, is best. Myelofibrosis is a wasting and debilitating disease, and that is about all one can say about it. Thank you for listening.