Romplostim

[salmagal]

Hi still on romiplostim can't seem to get even balance which means I'm going for blood on Wednesdays and ITP clinic on Thursday when my count is going low I have blood when blowing my nose also coughing up blood and small clot on last 2 low countsI wonder has anyone else had this

[Hidden]

I have been on romiplostin for 6 months. Currently on 6mcg per kilo. After it is increased my count goes up for a few weeks then slowly comes back down over next 3 weeks to 20 something. Then it is increased. So gets increased every 5 or 6 weeks. So hopefully it will stay up before i get to the maximum dose.i have blood test every 2 weeks and see doc every 6 weeks. I inject at home. Haven't had any bleeding or clots apart from some bruises. But my count seems to change quite quickly throughout the week.

[owenm]

I remember sitting in on a discussion about this,

What I remember being said is that everyone has a natural cycle and that there is an optimum time to administer the romiplostim, i believe it was just as the downward trend started, which then gave it a chance to start doing its thing before the platelet count dropped too low and subsequently keeping the platelet count up at a reasonable but ever-changing level.

Like I say, just trying to recount what I remember.

[NickyD]

HI Salmagal

I had been on Romiplostim for 12 months and am now free of it for three weeks. Romiplostim causes your count to go up and down and makes it very erratic. I have been going to hospital three times a week to have two blood tests, one injection of Romiplostime and to see my consultant every Monday.

I am now on a different drug called Mycophenolate. This is a tablet and is used for people who have had liver, heart and kidney transplants. I am on the maximum dose of this drug and my count is still erratic. Not as bad as when on Romiplostim but we are not sure that this is the drug for me.

Hope that helps. NickyD

[salmagal]

Thanks for all replys my consultant hoping to give 250 every 2 weeks can anyone tell me the highest dose of romiplostim

[Hidden]

I think it is 10mcg per kilo. So will depend on your weight.