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Pulmanary Embolisms and Promacta

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13 years 7 months ago #22811 by Theoldone
Pulmanary Embolisms and Promacta was created by Theoldone
Last wrote 2-23-12. I experienced an adverse event, pulmanary embolisms in
both lungs 1-19-12 and spent 11 days in cardiac ICU. Lung, vascular, hematologist, among others said clots were due to Promacta. I believe my age,
now 71, had a role. In the past 17yrs I have been on Prednisone, Rituxin and
most recently on Promacta (16 months) until I was hospitalized. Up until then
my health had been good and I took no other drugs.
A strainer was inserted in my vein to stop further clots from reaching my lungs
and Heparin was administered. On Promacta my average count was about 35,000. I
do well on that count.
Shortly before this advent my plateletes went up to 52,000. On entering the
hospital my count was 80,000. IVIg and antibiotic were given and my count went
up to 288,000 while hospitalized. I have had no bleeding problems.
Currently on Cumadin 5ml 5 days, 7 1/2ml 2 days. The challenge is keeping my platelets up to needed 40,000 or above while on Cumadin to dissapate the clots . Dr says I need to be on Cumadin 6 months. Received 2 treatments of
IVig in the past few weeks because of dropping plateletes (35,000).
Does anyone have any knowledge of being on Cumadin while having active ITP.
Many thanks for taking the time to read this note.
  • 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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13 years 7 months ago #22813 by Sandi
Replied by Sandi on topic Re: Pulmanary Embolisms and Promacta
Theo - there have been a few people on blood thinners while dealing with ITP. Hopefully, they will offer some advice.
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13 years 7 months ago #22835 by Theoldone
Replied by Theoldone on topic Re: Pulmanary Embolisms and Promacta
Theo and Sandy Thanks for the responce. I'm not too swift with this forum and I wanted to make sure I thanked you.
The Ivig treatment makes me ill 2 - 3 days after with chills & fevor,
but I have more good days than bad and for that I am thankful. The
treatment is now 7-10 days and I wonder if it will get me through the
months ahead on Cumadin. Wondering if I am going to survive this.
  • 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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13 years 7 months ago #22836 by Sandi
Replied by Sandi on topic Re: Pulmanary Embolisms and Promacta
Most people achieve a balance between the two, and hopefully you will too. Did Rituxan work for you at all?
  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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13 years 7 months ago #22854 by Kelirae24
Replied by Kelirae24 on topic Re: Pulmanary Embolisms and Promacta
Hi im 26 and had a stroke while on nplate my platelts hit 400-600,000 and they said because my platelets are so sticky thats what causes it butttt they wouldnt give me cumidin i was aggrenox horrible headacdhes plavix and asprin....the neurologist wanted to do cumadin bc the clot was still in y head but my hematologist said absolutely not so i got through it with a blood thinner in the stomach cannit remember the name of it and plavix and asprin. now when my platelets fo over 100 i take a baby asprin a day hope this helped a little?
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13 years 6 months ago #23234 by Theoldone
Replied by Theoldone on topic Re: Pulmanary Embolisms and Promacta
Sorry I didn't reply sooner and thanks you for your help.
Are you still on Nplate and if not, what are you taking?
My hemotologist said he no longer wanted to treat me with
Ivig. I am reluctant to go on Nplate because it looks
similar to Promacta.
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13 years 6 months ago #23235 by Theoldone
Replied by Theoldone on topic Re: Pulmanary Embolisms and Promacta
First treatment of Rituxan kept my levels safe for 1yr.
Second treatment of Rituxan kept my levels safe for 14mths
but developed and adverse event with my lungs which has
since disapated.