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#1
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New member- diagnosed with PRCA
Hi
I am 51 years old and have been diagnosed with pure red blood cell aplasia about a month back. Issues started in August-September this year when I began to experience severe breathlessness and dizziness even while walking short distances or doing simple exercises. Swelling of the ankles was also a regular feature along with tachycardia. Took a blood test (thanks to my wife who forced me to do so) which showed Hb levels of 4.9. I was immediately hospitalized and given 4 units of blood after which the level went up to 10.6 on discharge. Hb levels however fell to to 8.8 in 3 weeks time and was given another 2 units of blood last week. Several test have shown that my PRCA is idiopathic in nature as I do not have any infection, thymoma, etc. As per the bone marrow biopsy report, the bone marrow is mildly hypocellur for my age with almost complete absence of erythroid series. WBC and platelet count is normal. My doctor is hoping for a spontaneous recovery failing which he plans to start me on prednisone and cyclosporine. I was wondering if there is anyone in this forum with this condition and if they can share their experience of the effects of these drugs and side effects. Can these drugs be avoided? I am concerned about taking these drugs given the risk of infection as I live in a very crowded city (Mumbai). My apologies for posting here as PRCA is not listed in the section relating to bone marrow diseases. Thanks and regards to all Adil Gotla |
#2
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Adil
I am Ron Duncan, and you have recently joined our PRCA group on Facebook. I haven't been monitoring Marrowforums as often as I should. I'm glad you found our Facebook group.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/ |
#3
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Hi Ron
I am really happy to have found and be part of the PRCA group on facebook. It really helps reading about the first-hand experiences and interacting with the group members. Thanks so much for starting the group. Regards Adil |
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