|anemic, for life?
May 7, 2004
I wrote to you back on March 3 about having human parvo. I'm glad to say that I have suppressed the parvo. My problem now is I am still losing red blood cells at an alarming rate (I need blood tranfusions every 7-10days).
My doctors have me doing procrit shots weekly and I am doing 325mg of iron 3xdaily. My hemoglobin gets to the low 9's after two units of blood but a week later I am in the 7's.
I have had two bone marrow biopsys. Both came back negative. I had a CAT scan done last week and the results came back negative. I just came from my primary care doctor who says he has never seen this before. I see my hemotologist this week. I'm sure he probably will have no answers.
Is it possible that my bone marrow could have been destroyed from all the years of being on AZT. If so, is there anything I can do to reactivate it? My reticulocyte count is low (.1-.3) and apparently I'm not keeping the red blood cells as long as normal (90-120 days).
Response from Dr. Frascino
The hematologist is definitely the correct next step for you to take. Considering the severity and persistence of your problem, I'm a bit surprised you haven't already been referred for an evaluation. Who did the bone marrow biopsies?
The treatment for Parvovirus B19-induced anemia is intravenous gammaglobulin (IVIG) infusions. Are you getting IVIG? How often? Procrit is helpful for certain types of anemia. The dose is adjusted based on your response. The hematologist will advise you if Procrit is the correct therapy for you, and adjust the dose as needed.
Finally, AZT's effect of suppressing bone marrow function usually subsides quickly when the AZT is discontinued. The hematologist will review the bone marrow biopsy slides and other lab work (MCV elevation?) to determine if this could still be a contributing factor. Your HIV specialist will need to work closely with an HIV-savvy hematologist to quickly and thoroughly evaluate your problem. It appears that the exact cause of your anemia remains in question. I cannot give any more specific advice without having access to your lab results and details of your medical history. However, I definitely agree with the decision to have you evaluated by a hematologist ASAP. Keep me posted. Good luck.
Long term nonprogressor, but very ill
this blows my mind!!!
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