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Old Mon Sep 6, 2010, 04:49 PM
gipper gipper is offline
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Join Date: Sep 2010
Location: gainesville, GA
Posts: 10
Hi Julianna,

As Birgitta pointed out, there are two drugs in the pipeline for treating folks with low platelet counts. I have been receiving weekly doses of Nplate for 23 weeks. Here in the states the this drug has been approved for use in patients with ITP, which I was diagnosed with, along with MDS and myelofibrosis. However, my doctor has given me much lower doses than prescribed by the manufacturer. They recommend starting with a dose of 1 mcg/kg and increasing the dose by 1 each week up to a maximum dose of 10 mcg/kg. Nplate literature warns that folks with MDS may accelerate the time to AML and generally make things worse in the marrow. During my first four Dacogen cycles my count fell to 4 (4,000) and during the next four cycles it fell to 8. 22 platelet transfusions later I'm pretty much refractory to these transfusions. At the start of Nplate injections my count held in the 13 - 15 range and now I'm in the mid to upper 20's. I have never had a dose greater than 5 mcg/kg and only had that much once. My usual dose is 2. You can see the effect has not been too significant for me.

Due to myelofibrosis I have a greatly enlarged spleen (splenomegaly) and it is likely soaking up a lot of my platelet and red blood cells. Suspect I'll have a splenectomy before long.

I was given a prescription to use in case of uncontrolled bleeding. Thankfully I've never had to use it. There are other factors that influence clotting such as von Wildebrand factor.

Anyway take heart, treatment for your condition may not be too far away. Wishing you the best.
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