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NPLATE just curious if anyone knows the answer

  • 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 7 months ago #12869 by Kelirae24
I am 25 if i have to be on nplate forever and it makes my bone marrow work harder then the average person will this cause problems as i get older? i know its a new drug and no ones been on it that long to know just curious
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 7 months ago #12890 by Sandi
AT this point, I wouldn't plan on being on N-Plate forever. Forever is a long time! I would think that eventually, yes, N-Plate will cause a bone marrow problem (see below). There are always new treatments being developed and you can always have hope that something else will come out soon.

Bone marrow changes (increased reticulin and possible bone marrow fibrosis). Long-term use of Nplate® may cause changes in your bone marrow. These changes may lead to abnormal blood cells or your body making less blood cells. The mild form of these bone marrow changes is called "increased reticulin." It is not known if this may progress to a more severe form called "fibrosis." The mild form may cause no problems while the severe form may cause life-threatening blood problems. Signs of bone marrow changes may show up as abnormalities in your blood tests. Your healthcare provider will decide if abnormal blood tests mean that you should have bone marrow tests or if you should stop taking Nplate®.

www.nplate.com/patient/different_approach/different_approach.html
14 years 7 months ago #12909 by
Kellirae,

I think you've asked a very important question. And, I think Sandi's given you a reasonable answer. Common sense seems to dictate that if you are continually stimulating overproduction, something has got to give at some point. But, no one really knows what will happen. That's the purpose of signing people up for a study. You may not have to pay to get the drug, but you might eventually pay in other, unforeseeable ways. Only you can decide if you're willing to take that risk or not. But, it does worry me when I see these drugs being given to younger and younger children, especially those who are still developing.

Tough decisions!
April
  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 7 months ago - 14 years 7 months ago #13037 by Angel85
I don't wish to scare you but I was on it for only a short amount of time and I had many issues with it. I began to get increased production of my red and white blood cells and platelets were still on the low side and also it began making these things called blasts which are pre-cancer cells and i was at 4% and to be diagnosed with leukemia u need 5% or more. As soon as the dr saw the blood results showing all of that, he took me straight off the nplate and everything is back to normal. I wouldn't hope to be on it for the long term, my doctor said if I had been on it for over 12 months, he would have to do a bone marrow biopsy just to make sure there was no damage to my bone marrow like how Sandy mentioned.
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14 years 6 months ago #14112 by sailorsocks67
Replied by sailorsocks67 on topic Re: NPLATE just curious if anyone knows the answer
Wow Thanks! My new/old oncologist swears by n-plate.He assured me it is perfectly safe. That it's just a short term drug to pump up the count numbers. But I worry too waiting for the insurance auth. The side effect pamphlet he gave me to read was over 5 pages long. And with the HUGE cancer family history I worry...ALOT. So thank you for posting the question:)
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14 years 6 months ago #14115 by eklein
Isn't it so crazy with doctors. We have a new member whose doctor says nplate is too dangerous to use. Your doctor swears by nplate. Doctors shouldn't wonder why we question them and why we have to be our own advocates and well informe on our own. Look what we face.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 6 months ago #14117 by Sandi
You said it girl! I wouldn't believe either of those. 'Perfectly safe' and 'too dangerous' are opposite ends of the spectrum. Given the length of time the drug has been available and the known side effects vs benefits, I'd say it's 'possibly harmful' or 'reasonably safe'.