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TOPIC: Platelet Hope

Platelet Hope 4 months 3 weeks ago #65091

  • Sandi
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I treated with CellCept, but for Lupus, not ITP. I wasn't on it very long. The side effects were horrible. How long have you been on it?

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Platelet Hope 4 months 3 weeks ago #65092

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I’ve been on Cellcept for about 5 1/2 months now after I was diagnosed with lupus nephritis in May 2018. After 3 months, that when my hemoglobin started dropping that I had to have blood transfusions every 3 weeks.
I am also on Nplate since Oct 2017 for my ITP. But it’s been tapered off and I have not a doze for about a month now.
Thank you for the reply.
Allie2

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Platelet Hope 4 months 3 weeks ago #65100

  • Hal9000
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Allie, did your doc indicate a test and benchmark value for when Cellcept would be deemed a success? A protein test maybe? That's got to be good news for you that the Cellcept is working for ITP too, heh? Have counts gone up to normal range yet?

How are symptoms going? Sneezing or runny nose? Even with the low dose of Danazol I am on, seems like I have runny nose often. It comes and goes at will.

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Platelet Hope 4 months 3 weeks ago #65104

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I was diagnosed with lupus nephritis after kidney biopsy was done to confirm and started Cellcept in May 2018 with the following lab biomarker:
2018
4/30
DNA (DS) Antibody *124 IU/ml
5/2
-DNA AB(DS) crithidia titer *1:640
(normal range <1:10)
-DNA AB(DS) Crithidia,IFA *Positive
(normal range Negative)
8/2
DNA (DS) Antibody *46 IU/ml
(< or=4 Negative, 5-9 Indeterminate, > or=10 Positive)
9/13
DNA (DS) Antibody *27 IU/ml
That’s how Rheumatologist based the improvement and my symptoms like unexplained tiredness, flulike with no fever.

For my ITP, I get Nplate injection every week depends on my Platelet count since October 2017 after Splenectomy. Since August this year, my count has an average above 100 while my Nplate dose has been tapered off. My Hematologist’s goal is “No Nplate anything more than 100”. I have not had Nplate for 6 weeks now and my count has been on average 270.
I hope this is a good sign of my ITP progress.
My current issue is Anemia and I hope Aranesp treatment helps me. I get them every week and my CBC is monitored weekly as well. My hematologist’s treatment goal is Hg no more than 10.
Thank you and I do appreciate you all!
Allie2

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Platelet Hope 4 months 3 weeks ago #65106

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That DS DNA number looks like you've made a lot of progress. The 270 count is like icing on the cake.
Glad you are doing well.

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Platelet Hope 4 months 2 weeks ago #65118

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Thank you. I hope it will sustain!
Allie2

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