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I really hate the number 5

  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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14 years 9 months ago #10859 by Kelirae24
I really hate the number 5 was created by Kelirae24
Disagnosed at 17 steroids, ivig worked for me went into remission for three year after those treatments I am now 25 and four months ago i was admitted to the hospital at 4k and a hemoglobin of 3 i was bleeding very badly they got me up to 8k and my hemoglobin to 10 with platelet and blood transfusions I then went back down to 2k I have tried steroids ivig, rituxin i am allergic to, had a splenectomy, and nothing is working I tried promacta and was at 5k almost the whole time besides one day i went up to 24 then right back down to 5k, I started Nplate 3 weeks ago and still at 5k went up to 13 last week but right back to 5k I get my next dose tomorrow they are going up in dosage....This has been 4 months at 5k and not looking promising anyone have a similar story where they find something that works looking for some hope and encouragement this is getting very old very quick I lost my job because im going to the drs 3x a week and been in and out of the hospital and they tell you to take it easy I just want my life back! its always 5 or below its driving me crazy!
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14 years 9 months ago - 14 years 9 months ago #11055 by Tad Moody
Replied by Tad Moody on topic Re: I really hate the number 5
It can take a long time and a lot of failures before any given treatment "works".

All of my treatments since I was diagnosed in the early 1970's worked for varying lengths of time, but then eventually failed. The longest was a spleenectomy, which kept my counts above 100,000 for many years, but then one day, those evil little dots started showing up on my ankles, and so it was back to square 1.

The latest is Nplate which has been keeping my counts well over 70,000 since about March 2009, so far, so good. BUT it took over a YEAR before Nplate started working for me, so give it some time!

Good Luck!