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When to say Nplate is not working....

  • coach-troy@hotmail.com
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7 years 11 months ago #61724 by coach-troy@hotmail.com
When to say Nplate is not working.... was created by coach-troy@hotmail.com
So I am here getting my weekly CBC and Nplate shot. My platelet count came back at 3K. This will be my fourth Nplate shot with no real means of success. I’ve been on Dex to boost the platelets in the mean time but I crash as soon as I’m done with the pulse.

How long should I give the Nplate to work?

My Hem is already talking about switching it up. The trials said it could take anywhere from 3-8 weeks to get a response. I’ve not taken the highest dose possible. Last dose was 6mg/kg.

Have some pitechia today but that’s it so no real concerns as of right now with the platelet count being that low. They do want me to go inpatient again. But they seem to always want that anywhere under 20K.
  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 11 months ago #61727 by D.Mann
Replied by D.Mann on topic When to say Nplate is not working....
Have you tried IVIG yet, and can your Hemo do the infusions in his office? My Hemo is able to, so several times the hospital was suggested, but I chose in office infusions. I still takes 5-6 hours so I couldn't work those days but I did avoid the hospital. I will clarify that the times I chose in office treatment I did not have bleeding. Each time I have had active bleeding, the Hemo said "I'm not giving you a choice, go to the hospital."
He is very easy to work with and allows me to make the decisions.
  • coach-troy@hotmail.com
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7 years 11 months ago #61728 by coach-troy@hotmail.com
Replied by coach-troy@hotmail.com on topic When to say Nplate is not working....
I have had IVIG in the past. The first time lasted about two weeks with elevated counts and the second time lasted less than a week. He does have the option to administer it in office, however hospital protocol is inpatient under 10K. I can always refuse, I get that, but it speeds things up just to go inpatient for a day or two.
  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 11 months ago #61729 by D.Mann
Replied by D.Mann on topic When to say Nplate is not working....
I agree about things going faster in the hospital, seems insurance approvals and all happen faster. I was diagnosed in October 2016. I have been in the hospital 4 times and had in office IVIG treatments 3 times. One of the hospital stays was to remove my spleen.
You just have to make smart choices when counts are low. No working on the roof of the house or stock car racing but most activities are fine. The main thing is if there is active bleeding you need to get 24 hour care and observation.
I like my bed and my couch, the hospital not so much.
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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7 years 11 months ago #61730 by EmilyK
Replied by EmilyK on topic When to say Nplate is not working....
Sometimes if NPlare does not work, promacta does. Might worth a try.
  • 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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7 years 11 months ago #61732 by mrsb04
Replied by mrsb04 on topic When to say Nplate is not working....
I took Romiplostim (Nplate) for about a year. My response was varied and never consistent. When my count was 6 I gave it up as a bad job. I have now been on Eltrombopag (Promacta/Revolade depending on your country) since February and am much happier. Counts are much more stable unless I have an infection when then they always drop, but they go back up afterwards.
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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.


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