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Promacta

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7 years 10 months ago #61957 by Stevediam
Promacta was created by Stevediam
Hello. My father is a CLL patient who was just hospitalized for low platelets, 5k. He has historically been around 17-25k for the past two years. During this hospitalization, they introduced us to the idea he also has ITP as seen in his bone marrow.
They had him on IV1000mg’s of pred for 4 straight days and switched him to 60mg’s oral pills for a week, tapering by 10 mg’d Each week.
Along with the steroids, they started him on 75mg promacta.
After the initial 4 days of the 1000mg pred a 4 initial days or promacta, his plates raised to 21k. On day 6 they dropped to 20k and have remained there through today which is day 10.
I was wondering if I could get some of your stories and experiences as to when we can expect this promacta to kick in, or, if after 10 days if if hadn’t kicked in, should we assume it won’t?
Thank you.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 10 months ago #61958 by Sandi
Replied by Sandi on topic Promacta
It can take longer than two days for Promacta to begin to work. It can take anywhere from a week to a few months and many doctors give up on it before really giving it a chance. It can be frustrating waiting for it to work. Everyone is different and it requires patience. Steroids usually kick in right away, especially high doses. How are his symptoms?

ITP generally cannot be diagnosed by a bone marrow biopsy. I'm wondering how they know this is ITP as opposed to secondary thrombocytopenia due to the CLL.
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7 years 10 months ago #61961 by Stevediam
Replied by Stevediam on topic Promacta
I 100% agree with you as all of his symptoms scream CLL. I didn’t argue much as I figured whether it was the CLL or ITP, promacta could help raise his platelets either way, at least that’s what I was assuming.
He has developed prettt severe diarrhea the last few days which could be fromntge promacta as well. I guess we’ll continue to use it and discuss these item with his hematologist this week.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 9 months ago #61963 by Hal9000
Replied by Hal9000 on topic Promacta
Steve,
On the bone marrow test. Perhaps they didn't find any platelet production problems in the marrow and through a process of elimination deduced the issue is ITP.
If the next drug to try is Nplate, then there probably isn't a need to be too heroic about how long to try Promacta. There shouldn't be diarrhea problems with Nplate as well.
ITP Types and Treatments by HAL
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 9 months ago #61967 by Sandi
Replied by Sandi on topic Promacta

Stevediam wrote: I 100% agree with you as all of his symptoms scream CLL. I didn’t argue much as I figured whether it was the CLL or ITP, promacta could help raise his platelets either way, at least that’s what I was assuming. .


I meant to add that last night but got distracted. You're right, it would be appropriate in either case. I was mainly just curious how they determined that. Has your dad been on any antibiotics lately? That can cause diarrhea (C-Diff).

Hal: Platelet production problems are not found in the bone marrow unless it is MDS or a disorder like that. ITP is never diagnosed by BMB but other disorders can be eliminated.
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