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maryannesteiner's Message Board Messages

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hi ...i have found a pv group of friends in facebook and ive learned a lot from them ....http://www.facebook.com/groups/180180118669211/

they are ready to help and share things .....stay positive everyone and godbless...

hi,i think it is your right to get second opinion but as what i understand it is common for this  kind of procedure to undergo phlebotomy and taking hydroxyurea while the cbc/apc is not stable,i do excercise twice a day bcoz i am suffering of too much pain in my bones and muscles (arthritis) sometimes i forgot to follow what my doctor told me not to eat too much salty food,i sometimes think of why deprive myself in eating food i like but its true i should take it seriously else il suffer more...im on my 17th sessions of phlebo ,and still taking hydroxy 3x a day ,i can see i already improved in many ways wth regards to my health,i only have one question if hydroxy cause hair loss just noticed that everytime i comb my hair i got lots of hair fall.or its just the shampoo that i use...godbless and dont forget to smile always.... ;)

hi...is taking hydroxyurea will cause hair loss?....i was taking hydroxy for 5months already (polycythemia vera) i noticed i am having hairfall and my hair is no longer healthy as it is ....thanks in advance...godbless

hi barbara,honestly after reading this i am really scared,i was diagnosed last dec.2011 for polycythemia vera and now on my 14th sessions of phlebotomy(every friday starting january 2012)...and taking hydroxyurea 3x a day...and its good u suggested to have a second opinion,i know my hematologist is really good but it is my right to get another opinion from other specialists...thank you for ....take care...and godbless

 hi..i was diagnosed last december,having polycythemia vera is really an agony for me,since my labtests are still high (i go for labtest every friday for my cbc and apc) the doctor has to take atleast 400cc to 450 cc blood from me...it is really tiring,i weighed 180lbs before and now im 140lbs,i hv to follow doctors order nt to eat too much fatty food that includes low fat,low salt,etc..since then i do regular excercise too,bt the problem is that i sometimes feel too much pain with my bones and muscles,i easily get tired...i am now on my 14th sessions of phlebotomy and its good that my results are doing okay ...i just hope that it will be stable soon ,im so tired of going for check ups and buying my own medicine coz it is nt for free here n the philippines...i hope this can help you a bit for you to be aware of somethings...take care...

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