It has been ten months since my PA diagnosis (positive IFA test). After loading doses and tracking symptoms I have increased my injection frequency from once every 14 days to 10 days to 7 days to 5 days. Last month, I switched primary care physicians. My new doctor immediately knew of PA and was happy to prescribe injection vials for me to self administer every 5 days. Still, he was concerned at the frequency of the shots and referred me to a hematologist.
Today I met with the hematologist and was told that because my injections exceed the recommended treatment for PA (which he quoted as weekly injections for one month, then monthly injections), my anemia is cured. He said that my B12 levels are his only concern and that I should be careful to avoid toxic levels (which he admitted were thousands of times higher than any measured B12 level I have had). He also mentioned that any neurological damage is repaired. I asked him how he knew that, and he said something to the effect of "it's not like your whole nervous system is damaged". I asked if there were other tests we might run and got a firm "no". The bottom line is that
I don't doubt that there are knowledgeable hematologists out there, but PA was clearly not this doctor's strength. I only wish he were better informed or willing to refer me to someone else rather than saying untrue things. Thank goodness for my primary care doctor who freely admits that the PA patients he sees have a range of needs in terms of B12 shot frequency.
I have posted a few times on this forum and I'm always glad to read of other's experiences, especially with doctors. I hope my story is a reminder that you must keep searching for physicians who understand PA.