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Old Wed Jan 21, 2015, 11:12 AM
Rea Rea is offline
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Join Date: Dec 2013
Location: Columbus, OH
Posts: 11
Hello rajeevkiit, sorry to hear all that. I'll mimic these sentiments that there is a lot of support out there : ) and it's quite a variable disease, so there really isn't a good answer. I'm sorry.

I also agree seeking out a PNH specialist and Soliris. There's a private organization called PSI that helps with the medication costs (as of 2011-2013). https://www.patientservicesinc.org/

As well as with trying to not focus on the data. All of these diseases are so variable and over the years I've read a lot of people's stories. Each one is quite different. Also, there is some old data floating around out there. Soliris is a major game changer for PNH and I think it hasn't been out long enough to really see it's benefits.

A testament to it's variableness: I had a large clone size and 88% of my RBC were PNH cells. My haptoglobin never registered on the tests, even on steroids. And my LDH was 736 early in my diagnosis, after management (Soliris and steroids) it was average 270-350. Yet, I never had a blood clot (I had several scans and tests though because I also had severe migraines that caused vomiting and pain, indicators of a brain clot so it always had to be ruled out because of my PNH).

"Just make sure your doctor has put you on an anticoagulant such as warfarin." This is a common treatment for PNH patients if their platelets are in a good range and do not have Aplastic Anemia as well. Personally, I had low platelets with Moderate Aplastic Anemia, therefore I was not put on a blood thinning medication.

My low platelets may have contributed to the lack of blood clots, however PNH patients are always at risk regardless of platelet count. They still see patients with blood clots and low platelets.

Even though you are probably quite tired, light exercise like walking and leisure rides on stationary bikes (even sporadic a few minutes at a time) can help reduce a risk of blood clots.

I wish you the best of luck!
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Rea, 31; PNH/AA Nov. 2011; Horse ATG Feb. 2012; RI MUD BMT Jan 2013; Overall doing very well!
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