ITP Support Association
3,019 members1,515 posts

Grateful but frustrated

I have ITP. In March my cbc was 1000 and the doctors were as frustrated as I was. The count would go up substantially after a platelet transfusion and by the next day it would plummet. On Jan 30th 17 I was told they couldn't help me and I was going to die. I was in the hospital almost 64 days.We'll it's mid July 17 and they are adjusting nplate shots. I'm grateful to be here but frustrated with side effects. Ringing in the ears, hair loss and all the pounds I've gained. Please share your story.

Thanks..God bless you all.

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Hi, i have had ITP for 15 plus years and do not have any meds unless I need an op of some kind, then I get side effects from the meds they give me temporarily. My count has been down to 0 and I have been ok with that, no bleeding only the odd bruise, usually they are around 20-30. For the doctors to say you were going to die is a bit drastic, do you have any other condition with it for that to happen and what country are you from? I am in the UK.

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Well we are all going to die at some time, but I've never heard of anyone dying from ITP! I have had ITP for 8 years now, at least it was diagnosed then. I suspect I'd had it for a few years before that, but until I mentioned my frequent bruising at a doctor's visit, I was never tested. As my count was pretty stable then at 60-80 I did not receive any treatment, apart from the usual investigations to try and find what was causing it. It was determined that my immune system was destroying the platelets so they just monitored me for few years. Eventually my count fell to 29 so treatment was started. First steroids, then IVig, then Rituximab and finally romiplostim (NPlate). The latter was the only one that worked, keeping my by now fluctuating count fairly stable at 40-50. I was on that for three years until February 2017 when I asked if I could take tablets for my condition. The reason for my request was my impending holiday in the US, when I would be unable to keep the injections in a fridge due to the fact that I would be travelling around. My count responded dramatically to Eltrombopag, flying up to 487 within a week! After various adjustments to the dose I am now taking 25mg daily and my count is steady at about 140. As my ITP is caused by my immune system I have never had platelet transfusions as the count would plunge within hours. But please do not listen to any doctor who tells you that you are going to die, I am shocked that he said that! Nothing like giving a patient confidence ....! Take care and I hope you feel much better soon.

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