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N plate side effects

  • 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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10 years 2 months ago #50512 by Kelirae24
N plate side effects was created by Kelirae24
I have been getting 160-220 micro grams a week with minor side effects joint pain back pain mild headaches. My doctor decided he was going to up my dose to 500 micrograms I'm so miserable right now I don't know what to do I'm laying in bed with the worst pains in my body I've ever had dreading my 8 month old son will get up soon and I will have to move anything that does this to your body can't be good for you. Sometimes I swear the medicines worse then the Itp. Sorry just needed to vent to people who know how bad these treatments can be
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10 years 2 months ago #50517 by Robert1959
Replied by Robert1959 on topic N plate side effects
Is your doctor increasing your dose because of a major problem with your count at the moment?
As he is doubling your current dose, what does a 500mcg dose mean in terms of a dose level for you - is it for example a 10mcg per kg dose or is it a 9mcg per kg dose, etc, etc.
From my experience you need to be very careful with the higher doses of NPlate and the effect it can have on your count.
I too had a mild headache but thankfully no joint pain.
  • Kelirae24
  • Topic Author
  • Offline
  • 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
More
10 years 2 months ago #50520 by Kelirae24
Replied by Kelirae24 on topic N plate side effects
Yeah I actually had a stroke back in 2011 from my platelets jumping to 500,000 and higher but the dosing then was less then I'm getting now. I'm not really sure why he decided up the dose that much Tuesday I got 250 of nplate I was at 14 then Thursday I went for another CNBC I was at 26 and he did another 250
10 years 2 months ago - 10 years 2 months ago #50525 by
Replied by on topic N plate side effects
Kelirae that's exactly why my new hematologist doesn't want a big jump in count.

Have you informed him that your are having these extreme joint pains since the increase in nplate? That doesn't sound good and is this something you should be going through, or should the dose be cut back again? (I know nothing about nplate)
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10 years 2 months ago #50528 by Ann
Replied by Ann on topic N plate side effects
Kelirae, you have to speak up and tell your doctor that you aren't happy with this. I did that when I was on CellCept and had joint pains. I tolerated it as long as I wanted to and then said that's it, no more. So we stopped and tried something else. It's your body, you have a right to make your own choices.
  • Kelirae24
  • Topic Author
  • Offline
  • 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
More
10 years 2 months ago #50531 by Kelirae24
Replied by Kelirae24 on topic N plate side effects
Yes I agree thank you guys i let him intimidate me sometimes not sure why not like that with Anyone lol, im going to have to because feeling awful all the time is not working for me hoping platelets are up tomorrow I can't take another dose right now
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