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platelets less then 10

  • dmurashi09
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  • Diagnosed with ITP in 2011 at age 45. Remission 11 years until 2022.
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1 year 5 months ago #72860 by dmurashi09
Replied by dmurashi09 on topic platelets less then 10
poseymint - thank you for sharing your experience with Promacta.  So, I haven't started taking it yet due mostly to doc miscommunication regarding dosing and a little to do with insurance and which pharmacy they allow to fulfill.  I won't go into the details but the Promacta will arrive on 1/4 by mail.  In a way, I'm glad because my platelet count was 31K on this week's lab. It was 17K last week.  This in spite of tapering the steroids over the past 2 weeks. I'm plan to be off entirely by the end of next week.  I am doing diet-related things aimed at reducing inflammation in the body, and taking some supplements aimed at balancing the immune system and increasing calcium absorbtion (steroid mitigation). I can share the protocol if interested.  I don't know for certain if the dietary changes contributed to the increase in platelets but I will continue and see how it plays out. My personal therapy plan is that if my counts are >=30K, I don't want to medicate. But I am glad the Promacta will be available if needed.  
Was there a reason you switched from Promaca to Nplate?

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1 year 5 months ago #72861 by poseymint
Replied by poseymint on topic platelets less then 10
Dmurashi~ If my counts would stay above 30K, I wouldn't take any medication. "Watch and Wait" is a valid plan for ITP. They often just monitor the platelet counts in children. A lot depends on symptoms, and lifestyle risks. I drive a car, usually on back roads but don't do much else that is physically risky. My first hematologist told me that they can do open heart surgery with a count of 50. I'm honestly more worried about the side effects of treatments than low platelets. That said, I do try to keep my numbers above 20, above 30 is better.
You might enjoy hearing the talks from Dr Drew Proven and ITP expert in the UK. He is brilliant and so helpful, a leader in common sense approach to ITP.  Here is a talk from 2020.        www.youtube.com/watch?v=lcC329pd-fY
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  • dmurashi09
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  • Diagnosed with ITP in 2011 at age 45. Remission 11 years until 2022.
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1 year 5 months ago #72866 by dmurashi09
Replied by dmurashi09 on topic platelets less then 10
Thanks for sending the link to the Dr Proven video, which is excellent.  It reinforces my plan to essentially manage my own ITP therapy. My doc is decent but he falls into the category of doctor that treats to count, not the patient goals. With that, he hasn't resisted my demands regarding steroid withdrawal and the desire to move to TPO-RA (Promacta) therapies in lieu.  If things continue this way I will stick with him.  Like you, I am more concerned about drug side effects than platelets below 20-30K.  Single digits is a different story for me but many here have seemed to manage even at that level. From the video,  "ITP isn't as dangerous as we thought" resonated.  We have to be careful but also live our lives.  Thanks again sharing.  And Happy New Year!  (cute pup, btw)

-Derek (dmurashi09)

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  • 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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1 year 5 months ago #72869 by mrsb04
Replied by mrsb04 on topic platelets less then 10
Good for you Derek. I'm lucky to have a haemo who supports self management. I spent over 40 years as a  front line nurse and always tried to educate my patients about self care/ Doctors do not always know best. 
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1 year 5 months ago #72871 by MelA
Replied by MelA on topic platelets less then 10
 I spent over 40 years as a  front line nurse and always tried to educate my patients about self care/ Doctors do not always know best. 
And mrsb that is why the saying goes:  "thank a nurse, they keep doctors from accidentally killing you"  :)

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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1 year 4 months ago #72928 by Margaret k
Replied by Margaret k on topic platelets less then 10
Sorry to near about your  dip. I was at 1 a few times in the first 3 years of itp. I was usually in hospital for a day or two but went home when they realised that transfusions , steroids and ivig didnt work for me. I was saved  by 75mg promacta 7x per week which  very gradually  raised my count but am glad to say 7 years later i am now stable on 25 gms 4x week.
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