N-Plate and AA

[Snuuze]

Hi All

Does anyone have experience using N-Plate to stimulate platelet growth?
I've had ATG and have been on Cyclosporine since May. I also take Soliris because I have PNH as well. There is a slight chance that the Cyclosporine is having an effect on the WBC and RBC, but it hasn't touched the platelets. Last BMB said no platelets at all in bone marrow.

My doctor would like to try N-Plate, although it hasn't been FDA approved to help platelet production in AA. It is currently being used for some other platelet condition and she says that she sees no reason why it shouldn't also work for AA. Perhaps there is someone on this forum whose doctor has tried the same approach.

I'd love to hear from you.
Sue

[gipper]

Hi Sue,

My hematologist put me on Nplate in 2010 since I had become refractory to platelet transfusions and had been recording counts from 9000 to 16,000 (although without any bleeding episodes). At the time it wasn't recommended for MDS patients, however I had also been diagnosed with ITP. So I received 27 weekly injections and my count did increase to the mid twenty thousands on average. My doctor did not follow the prescribed dosing schedule due to concern for marrow damage. The manufacturer recommends dosing to start at 1mcg/kg and increasing 1 each week up to a maximum of 10 mcg/kg. My typical dose was 3 mcg/kg although it was increased to 5 on one occasion without a dramatic resultant increase. Following that I went on thalidomide with prednisone and that ultimately raised my platelet count to 40,000. And that allowed me to have a splenectomy in May of this year. My spleen had become massively enlarged. Then my platelet count rose to more than 200,000 and is currently slightly lower. Anyway that's my experience with Nplate.

Gipper

[Susan]

Gipper, That's great! Wow. Thanks for sharing your good results using thalidomide with prednisone. Just wonder if the thalidomide helped or just the Predisione. Plus how to know. If my platelet trend down continues I'll be considering all the options. I got off Prednisone a while back due to osteoporosis and hoep I don't have to use it again. Very helpful when others report their experience.

Sue, I also have AA and PNH. Was hoping my very large clone would keep the AA in check somewhat. How did the N Plate work out, did you try anything else and did it help?

[Snuuze]

Thanks for asking, Suz. As of today I am 5 weeks without a platelet transfusion and my platelets actually went up. Not that rising from 17 to 19 is anything to write home up about, but it does make me cautiously optimistic. We aren't sure if it is the Nplate, the double dose of platelets at the last transfusion, or perhaps a side effect of the cyclosporine & ATG that began in May. HGB transfusions are spreading a bit as well and I have a little more energy.

[Susan]

Are the docs saying your counts might raise later, not right after the spleen was taken out? I know spenectomy works in some cases. Sorry you had to have surgery and hope you get more up movement from any of the treatments soon.. At least your energy is a bit better:-)

Suz