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newly diagnosed , need suggetion

3 years 3 months ago #70659 by ivan
newly diagnosed , need suggetion was created by ivan
hi all
my platelet count is 12k in feb 2020. later i went to hematologist for treatment.
here are my some tests and results . please suggest me what to do next.

20 th june
platelet count is 12 k
hb. 14.3
total count 5800
neutrophils 55
lymphocytes 43
lever function test done
hiv negative
hbsAg negative
bone marrow aspiration done
no hemoparasites /abnormal cells found
impression : thrombocytopenia due to periphheral destruction
LDH 174u/l

given 4 doses of dexamethasone 8mg , after the doses it went to 48 k. on 29th of june it came back to 13k

from 30th june again 4 doses of dexamethasone 40 mg given , platelet went upto 73k on 5 th day, but on 11th july it came back to 14 k

ANA done , result is negative
USG abdomen and pelvis ,2D echo test done .
AHBC total test done result is 0.8
AHBC IGM result is 0.17
APTT is 25.9

doctor advised for 4 doses retuximab 700 mg, but the recovery rate will be 50% , and its very expensive too..

after that I started to drink Papaya leaf extract juice , 25ml twice a day came to around 30k.
but now its again came back to 14 k ,

can anyone please suggest me what to do next ???


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3 years 3 months ago #70660 by bikerdude
Replied by bikerdude on topic newly diagnosed , need suggetion
Hi Ivan,
I am sorry you find yourself in this group but I have found it a very good place to educate myself. I was first diagnosed in May 2020, and all tests and diagnostic imaging ruled out other causes so I was left with immune thrombocytopenia. The two courses of dex did not result in a sustained recovery. IVIg would give a boost but my platelet counts fell back within a week or so. Because of my age it didn't seem that a splenectomy gave enough of a potential for a cure versus the risks so I passed on that option. I did a course of three infusions of rituximab, originally to have been 4, and that seems to be holding around 90k. We stretched the CBC out to one month, and my next blood draw is on Tuesday of next week. I've not seen any increased bruising so I think I am still holding pretty well. For me it seems to have worked, at least for now, but it was very expensive, as was the IVIg. I am fortunate to have good insurance here in the US.

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