Medication issues: I have had CLL FOR 8 years... - CLL Support

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Medication issues

Dummer70 profile image
6 Replies

I have had CLL FOR 8 years, was on Imbruvica for six years, off now. But my platelets were down 33 , went on Prednisone for two weeks, platelets up to 129. . My doctor would like me to go on Promticia. Anyone else on it?

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Dummer70
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AussieNeil profile image
AussieNeilPartnerAdministrator

PROMACTA® (eltrombopag) us.promacta.com/ can be used to boost your platelet counts, but it's rarely used when you have CLL. That's because with CLL, the common causes of low platelet counts are CLL bone marrow infiltration, spleen enlargement or Idiopathic Thrombocytopenic Purpura (ITP), an autoimmune condition and these are best treated by other means.

I'd recommend seeking a second opinion, which because you live in the USA, may be available to you free from a CLL specialist, through the CLL Society's excellent Expert Access program: cllsociety.org/cll-society-...

Neil

Dummer70 profile image
Dummer70 in reply to AussieNeil

Interesting! As our Doctor is recognized as a specialist in CLL .

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to Dummer70

I did say rarely used; we have 8 posts mentioning eltrombopag in over 32,000 posts: healthunlocked.com/cllsuppo...

and 5 mentioning promacta

healthunlocked.com/cllsuppo...

Note these posts also commonly mention ITP, where steroid treatment (Prednisone, as you had), is generally first used. It seems your specialist considers you have ITP, so eltrombopag makes sense, but you didn't mention this diagnosis in your post.

Neil

Dummer70 profile image
Dummer70 in reply to AussieNeil

Thank you! And there might be other reasons, for suggesting that med.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to Dummer70

Indeed, which is why it's so important to ask your specialist why they have recommended a specific treatment.

Dummer70 profile image
Dummer70

I will! Of course, thank you!

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