Thrombocythemia

I was diagnosed with thrombocythemia in 1978. My platelet count was over 4 million. I went to Cleveland Clinic and was put on hydria, which is very aggressive in that it kills red and white cells along with the platelets. After several months of treatments, it was decided to quit the hydria and use aspirin as a preventative of strokes or clots. The platelets slowly crept back up. What I considered strange, was that in 1981, I became pregnant with my daughter and my platelets dropped to 500,000, very close to normal. After delivery, they went right back up. I am now being treated with 1 mg. of agyrlin each day. My platelets are around 400,00, the lowest ever. I have had terrible problems with the medication. It is believed that the medication caused my conjestive heart failure. I have swelling, redness and rash in the lower legs. I, also have sharp shooting pains. I have numbness in my limbs which doctors contribute to raynauds syndrome. I am not so sure. I believe all my medical problems stem from the thrombocythemia.

Hi,

My grandma has ET and has been experiencing many side effects. She has been on hydroxyurea for over 10 years. She also has problems with her legs. She has very large ulcers. Have you experienced this also? Have they been diagnosed? One diagnosis I have been researching is pyoderma gangrenosum. Have you heard of it?

 I really want to help her in this struggle. Do you have any suggestions? She has seen many doctors for her legs and they just get frustrated and refer her to someone else. I would like to know if anyone else has experienced these ulcers and if they have recieved any help.