Increasing cellcept after cryptococcal meningitis

[Angiepkd]

Hi all!  Sorry it's been a while, but it has been a really hectic year.  At the end of December I was diagnosed with cryptococcal meningitis and after 3 ER visits they finally figured it out.  I ended up in intensive care for a few weeks and am told I almost died.  I have very few memories of the entire event.  I had to be given multiple doses of amphotericen B (nick named ampho-terrible).  I lost some kidney function because of the nephrotoxicity of this drug, and have some lasting side effects.  Anyway...I am now prescribed 800mgs of fluconazole daily.  This med affects tacro levels and my dose has been reduced to 1 1/2mgs daily.  After the 4 month mark, the transplant team decided I needed to be back on cellcept at a much lower dose 100mgs twice daily.  Last week I had the 3 hour test done to see what my levels were and the results were low.  They increased the evening dose to 200mgs.  I am extremely nervous about increasing any of the anti-rejection meds because I still have the cryptococcal fungus in my blood.  If I have been on a low dose of cellcept for these last few months, why does it need to be increased?  Wouldn't I have shown signs of rejection before now if the levels were insufficient?  I am not sure how the tacro and cellcept work together.  The tx team consulted with my infectious disease doc and he said it would be fine. I am just afraid lowering my immune system more will allow the cryptococcal meningitis to come back.  I can't think of anything worse than having that again.  It was truly horrible.  I am still not back to my old self yet.  The infectious disease said it has a high rate of recurrence.  Anyone else have this type of meningitis before?  Do I need the increased cellcept if I am doing fine on my current dose?  Thanks for any help!

[okarol]

Sorry Angie, I have no experience here, but just wanted to tell you I am glad you're better and hope you find the answers you need.