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I'm coming off N Plate

  • mrsb04
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  • 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 1 week ago #55815 by mrsb04
I'm coming off N Plate was created by mrsb04
I've been on N plate over a year & had reasonable response to it. However as an experienced renal nurse I am only too well aware of the damage micro clots can do to kidneys and am not prepared to take the risk for much longer.

My thoughts are a small dose of Prednisolone i.e..less than 7.5mg a day would be a lesser risk.

I have had a full & frank discussion with my consultant haematologist this morning & she if supportive of my decision.

Next week I have a small surgical op planned so will take 150mcg as normal then I am to taper down over following 4 weeks as hopefully warding off a sudden crash in count.

I'm still on Prednisolone at 3mg daily. Consultant is happy stay on that dose & adopt a watch & wait policy with a count of above 10 as acceptable, but I know only too well that if count drops below 30 I'll be frozen stiff and get fatigued so may have to tinker slightly with Pred dose.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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9 years 1 week ago #55818 by Hal9000
Replied by Hal9000 on topic I'm coming off N Plate
You know, 'watch & wait' could be more tempting than realized at first glance.

Have you read about how science may be able to manufacture platelets as early as next year? If they can do that, related technologies to significantly help ITP could be just around the corner. Perhaps even with none of the nasty / toxic side effects of therapies today.

Just a thought...
  • mrsb04
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  • 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.
More
9 years 1 week ago #55820 by mrsb04
Replied by mrsb04 on topic I'm coming off N Plate
Hal it is indeed a splendid thought but won't happen for a long time I fear so I'll be watching & waiting for a good few years

This is from the NHS Blood & Transplant site

"The success of this research team in producing megakaryocytes in the laboratory has paved the way for the ultimate goal, manufacturing platelets for transfusion. It will, however be many years before a process for the large scale production of platelets is developed. Donated platelets will still be needed by patients for the foreseeable future, either as part of a blood donation or by dedicated platelet donation using a machine collection process."

Anne