hydrea-thrombocythemia

Hi, I was diagnosed with thrombocythemia in May 2008, I am 43 years old and raising 3 children.... I was so excited to know that I wasnt the only one suffering from this.... my platlet count was at 1.7 million-- I had a tia and was admitted to the hospital for almost a week  I had platlet fresis twice. and was put on 4000 mg of hydrea a day ... I am now down to 1000 mg of hydrea a day and my platlets are at 534...The hydrea hasnt really given me any side affects---- but i am now experiencing a tingling sensation in both of my legs... Didnt know if any one else has either .. I am trying to get thru this but the doctors have changed the dosage of hydrea so many times , I feel like I am on a roller coaster and need to get off... I have my good days and bad days .. I am just now beginning to understand that I cant do the things that I used to do ... I was on the go all the time ... now I can maybe do 1/3 of the things I used to be able to do... Does it get better????? I appreciated reading all of the other feed back about this disease. it has actually helped alot.. so I thank all of you very much

Hi

I was diagnosed with ET about 3 months ago. Started on Hydrea 1000 mg a day. It was found by a visit to the Dermatologist because of a rash and purple splotches on my feet and legs. She looked back on the lab history had some more labs done and then sent me to the Hematologist. I had a bonemarrow biopsy and the JAK2  he had done come back positive.

I also have problems with my feet and legs hurting burning and that tingly feeling usually worse at night.  I itch like crazy after showers or if I sweat. In the last few years I have had a terrible time with the itching. I have asked my regular Doc but I think he just figured it was allergies. I feel a little angry that he never took my concerns seriously and never thought anything about the screwy labs when he would see me. He finally sent me to the Dermatologist because I complained so much about the rash on my hands.  Looking back I recall things that I would mention to him like feeling tired, dizzy spells, headaches, etc. and he never really looked in to why I was having  these symptoms. He added harmones, increased the thyroid meds etc. but now I know why I still feel bad.  My Hematologist/Oncologist says with this medication I will feel a lot better soon. WeLL I wish SOON would hurry up and get here.

ANYWAY...I hope by giving you a list of the weird symptoms I have had it may help you to look at some you might be having.   GOOD LUCK

FEEL BETTER and BE STRONG..........  TORI