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how long is too long to have really low platelets?

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14 years 8 months ago #15186 by gkilianek
I have been on Nplate since last september. I go weekly and my platelets have been like a roller coaster. About 2 months ago I hit 999,999k!!!!!When this happened we stopped the injections and within days I had bleeding of the throat and nose, with counts as low as 3k. For the passed month I have been on the highest does of 10mcg and my platetes went from 14k, 10k, 7k, and now 5k. This week I will go Tuesday and will speak with the Doctor. I have recently gone for a second opinion and that Dr. said to stay with the Nplate since I have not had to be hospitalized very much for bleeds. My history is that I was diagnosed in 2006. I have tried every medication except for promacta and I have also had my spleen removed. In the past I had a bleed in the brain and there was no proven diagnosis as of why it happened...my platelets had been low for about two months. I am getting very frustrated with "I dont know" answers...
Here is my question..
Is it safe to still take an Nplate injection if my platelets are over 350k? My Dr. and I had a discussion and he said that next time the injection elevates my platelets he would like to still give an injection. I am scared to do this. I am worried about blood clots and other complications.

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14 years 8 months ago #15232 by Bunnie
It's tough for many of us to comment. While there are few here who were in the original clinical trails, the truth is that Promata and NPlate just haven't been out long enough to easily answer your questions.

From the postings I've seen, there are definitely swings while on them. The clinical target seems to be 50K rather than normal, so I can see why they stopped the injections when you hit the 1M threshold. One thought that was brought up during the last PDSA conference was that while "weekly" was the suggested dosing, perhaps a diffent cycle like 10 days would be more appropriate for some patients. It might be another option to discuss with your doctor when your elevated.

"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra

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14 years 8 months ago #15238 by Dean
999,999k!!!!! Wow, I did not think ones counts could go that high.

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14 years 8 months ago - 14 years 8 months ago #15245 by Ann
The guidelines from Amgen changed in January here. Whether it's the same where you are I couldn't say. They now say not to take it if the count is above 250 instead of the old 400 although they do say to use medical judgement on that, but do be careful. I know the high counts worry me.

www.medicines.org.uk/EMC/medicine/22316/SPC/Nplate/

Found this..

www.mhra.gov.uk/home/idcplg?IdcService=GET_FILE&dDocName=CON105743&RevisionSelectionMethod=Latest
The following user(s) said Thank You: gkilianek

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14 years 8 months ago #15268 by gkilianek
Thank you for the responses. I have had ITP for over 5 years now and I never would have thought I would get a test result back with 999K either! I had a visit with my Hematologist today and my count is up to 13k, it was only 4k last week. I have been getting 10mcg of nplate for the last 5 weeks now. At this point I cant help but wonder if there is an underlying issue. I have results that Nplate works, and for it to be so low right now I really believe something is going on. I will be going through some tests in the near future. Thanks for the info Ann I will check it out. have a great week everybody!

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