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#1
Thu Jul 26, 2012, 09:39 AM
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ITP adn Nplate
Hi everybody!
Hope everyone here is doing well! I am new to this forum and I not even very sure where I have to post my question. As well I come from Bulgaria and I would like to apologize for any language mistakes. I have been diagnosed with ITP 4.5 years ago. For the time being my platelets count was quite stable – 40-50 and I felt quite well. Since New Year my platelets are dropping down. I was on Prednisolone but without any positive effect. Taking it I was keeping the platelet count around 40. After stopping they dropped down to 23, then 14 and from yesterday they are 5. And here comes my question. Tomorrow I will start Nplate treatment. I read many article for it and I am scared a lot. Side effects of the medicine sounds quite serious (like fibrosis), but my hematologist say that for now this is the only option. Does any one of you have been given this? What are the results? What about this fibrosis. I have so many questions in my head; I am so worried and will be very thankful if any one can help with an information. I will appreciate also all the negative experience. I just want to know as much as I can. Unfortunately here in Bulgaria the medicine is not so well developed. We do not have so many new and modern treatment methods and I was not able to find any real patient here treated with Nplate. Wish you all the best!  Vessela 
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#2
Thu Jul 26, 2012, 01:02 PM
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ITP
Hi Vessela,
You know this forum is for patients with bone marrow diseases. You have ITP and here is a forum for you - I look at it daily to keep up with treatment for low platelets. http://www.pdsa.org/forum/recent.html Kind regards Birgitta-A
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#3
Sat Jul 28, 2012, 05:25 PM
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Hi Vessela
I've been treated with Nplate since October 2011. My platelets are now stable at about 50; prior to that I had platelet transfusions just about weekly. I don't have ITP, so can't speak to that. Also I take several other drugs for MDS and PNH, so don't know how they all interact. You sort of have to pick your poison and hope that the treatment prescribed works for you without complications. These diseases require a lot of faith in your doctors. Sue
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Sue, age 72; Dx 6/2010 MDS Int-2. Revlimid unsuccessful, began Aranesp 10/2010; additionally Dx PNH 2/2011, Soliris added 3/2011. ATG 5/2011, Cyclosporine 5/2011. Nplate 10/2011 to 10/2012 . Exjade began 12/2013 due to high ferritin level, discontinued 3/2014 because of increase in creatinine.
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#5
Fri Jan 11, 2013, 02:02 PM
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Judith, I just sent you a private message so we can communicate offline.
Sue
__________________
Sue, age 72; Dx 6/2010 MDS Int-2. Revlimid unsuccessful, began Aranesp 10/2010; additionally Dx PNH 2/2011, Soliris added 3/2011. ATG 5/2011, Cyclosporine 5/2011. Nplate 10/2011 to 10/2012 . Exjade began 12/2013 due to high ferritin level, discontinued 3/2014 because of increase in creatinine.
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