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Nplate

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9 years 2 months ago #56940 by bst1201
Nplate was created by bst1201
Hi I was just diagnosed with itp. Platelets are very low, have tried prednisone and ivig (with reaction). Doctor wants me to start Nplate tomorrow. I was wondering if anyone on this site is on this drug and what (if any) side effects have you experienced. Is the injection painful and quick like a regular vaccine or is it a long process. I would also like to know your feelings on if the treatments outweighs the risks/side effects with this drug. Any information would be greatly appreciated.

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9 years 2 months ago #56953 by Rob16
Replied by Rob16 on topic Nplate
On a different thread I wrote:

Before deciding HOW to treat, you should make sure you are clear on WHETHER to treat. Every treatment for ITP has potential side effects, many of them potentially fatal. Many people are electing not to treat, or to treat temporarily only when necessary, and to live with low counts.

Are you treating now? What happens when you don't treat? How low are your counts? How severe are your symptoms?

Also lifestyle: do you engage in contact sports or hazardous activities?

So, whether the treatment outweighs the risk depends on the risk of NOT treating.

From the comments on this website, as well as from the research that has been done, Nplate and Promacta probably have the smallest risk and fewest side effects. The greatest risk may be blood clots. It is important that your dosage is targeted at achieving counts near 50k which is well below normal but generally a safe level.

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9 years 2 months ago #56956 by bst1201
Replied by bst1201 on topic Nplate
Thsnk you. My count was 1000 and I started bleeding internally. In icu for 6 days. Count went to 130, 75, 5 and hovered around 30. Another blood draw tomorrow.

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  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 2 months ago - 9 years 2 months ago #56960 by mrsb04
Replied by mrsb04 on topic Nplate
bst1201.. I refer you to this post

pdsa.org/forum-sp-534/6-general-itp-discussion/29301-apb-to-all-nplate-users-micro-clot-side-effects.html#55431

As a very experienced renal specialist nurse it frightened the life out of me. I know what harm micro clots can do to kidneys let alone any other vital organs.
I discussed this with my haemo consultant who agreed and formulated a taper plan.
Incidentally I never got to the end of the plan as I lost response and stopped it altogether.

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9 years 1 month ago #57026 by sierra1129
Replied by sierra1129 on topic Nplate
My son who is 22 has been on Nplate for 2 years now with no side effects. His Platelet counts very each week and we have tried to lower the dose in the hopes of taking him off the shot but when they lower the dose his platelets drop significantly. Its been frustrating to say the least as we try to stabilize his counts.
francine gil

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  • 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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9 years 1 month ago #57033 by Sandi
Replied by Sandi on topic Nplate
Sierra:

N-Plate is a maintenance drug which means that counts will stay up as long as the patient keeps getting the injections. Counts will usually drop if the dose is dropped. Some people do go into remission while on N-Plate and if that happens, counts will usually go into high-normal range, and that is an indication that maybe remission is occurring.

Otherwise, N-Plate should be given at the lowest possible dose to achieve counts around 50k. That dose should be maintained for a stable count.

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Platelet Disorder Support Association

Platelet Disorder Support Association
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IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.