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Painful feet and toes

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12 years 9 months ago #34959 by marosa
Painful feet and toes was created by marosa
Hi have been on a weekly dose of 400 Nplate for 3 months now was count has been wavering between 380 and 406 last week suddenly developed unbearable pain in feet and toes my doctor is doing test has also put me on low dose of amitriptyline for pain I only have blood checked once a month now go back to ITP clinic on Thursday my doc is wondering if platelet count is going to high now has anyone else had anything like this kind regards marosa

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12 years 9 months ago #35006 by Ann
Replied by Ann on topic Painful feet and toes
YOur count is way too high for Nplate. The manufacturer says that if it is over 250 you should not use it until it gets lower.
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12 years 9 months ago #35012 by marosa
Replied by marosa on topic Painful feet and toes
Hi Ann have just came back from ITP clinic today my consultant was going to give me 8 weeks of Nplate at weekly dose of 400 after complaining. They decided not to give it and get blood done next week also to be referred to neurologist to see if feet pain is side effect or something else I have checked the dose here in the uk and it states miss a dose if 400 for 2 weeks until count goes under 200 surely consultants should know this

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12 years 9 months ago #35027 by Ann
Replied by Ann on topic Painful feet and toes
The guidelines have been changed since the high dose was 400 and it now generally recommends lower limits. The most up to date SPC is here..

www.medicines.org.uk/emc/medicine/23117/SPC/Nplate+with+Reconstitution+Pack/

I only comment because high counts with Nplate worry me. As long as the decision to continue treating is an informed one then that's fine. There was someone here who was kept at high counts on Nplate and she had a stroke. Just be aware is all.
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12 years 9 months ago #35036 by marosa
Replied by marosa on topic Painful feet and toes
Hi Ann thanks for reply will take this up with consultant as both feet are absolute agony will let you know how it goes

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12 years 9 months ago #35045 by Vdeutsch85
Replied by Vdeutsch85 on topic Painful feet and toes
I hope you feel better! I've been in a situation where the doctor was not following the guidelines. I've had to pull them up on IPad. However, when the guidelines are followed correctly, many people have success with Nplate, including myself,
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Platelet Disorder Support Association

Platelet Disorder Support Association
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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.