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Hi guys,
Since you mentioned bactrim / nystatin and counts, I thought I'd chime in with my experience.
I was first diagnosed with PRCA but now they're calling it AA. I am red cell transfusion dependent. I have tried cyclosporine, IVIG and ATG/tacrolimus and quit all that 2 years ago. I believe (from lots of evidence) that chronic infection may be the cause of these blood disorders.
I tried bactrim ds for a UTI back last Sept and ended up with a fever of almost 104 and a huge drop in HGB. I thought I had the flu but now am wondering if it was the bactrim. I quit the bactrim for awhile and things went back to the way they were.
Anyway, part of my treatment involved taking 1/2 a bactrim ds every 48 hours. I waited until I was over the "flu" I had. The first time I took it, I had a severe reaction including projectile vomiting and fever. I reacted to bactrim over 20 years ago and have always avoided it. My dr encouraged me to try a smaller dose. I waited a couple weeks until I dared try again and then tried 1/8 bactrim ds and had a small reaction but nothing intolerable. I stayed at the dose for several weeks and after each dose I had less and less symptoms. Eventually I increased it by another 1/8. I noticed I had a big drop in platelets, they went down into the 20s, when they had been in the 60's - 90's for the longest time.
Around the same time, I started taking oral nystatin in a fairly large dose, daily. My WBC had been around 1.8 all the time, now dropped to 0.8, 0.7. Neutrophils dropped to 0.3. I've been here since Jan but I feel pretty good.
If this is bacterial, then I am slowly reducing my bacterial/fungal load, and eventually things should improve. I was noticing my HGB drops were slowly becoming smaller, below average, for 8 weeks in a row. I added a 2nd antibiotic - minocycline at 50 mg every 48 hrs and dropped bactrim down to 1/8 again and started ramping up the bactrim every 2 weeks. I got up to 1/2 and suddenly had a big drop in HGB. Platelets range between 30's - 50's, they did dip down into the 20's for a few weeks. I'm currently at 1/2 a bactrim ds and staying here until my HGB drop normalizes.
Anyway, my feeling is that the combo nystatin / minocycline / bactrim is fighting something. I know about the warnings for bactrim, but I wonder if it's because it is actually helping kill microbes, which would also kill the cells they are in.
I am getting a DNA test of my blood soon to test for microbes that can't be cultured, I ordered some kits from ubiome.com. It'll be interesting to see what shows up.
Thanks for letting me ramble. I am actually feeling pretty good these days. I work full time, ride my horse and have a positive outlook. I have no problems with infections even with ridiculously low WBC / ANC, no problems with bruising or bleeding, just the fatigue from anemia every 2 weeks.
This really is a strange disease.
Deb
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