Mycophenolate Mofetil–Induced Neutropenic Sepsis

[George_2017]

Hi all, on the 18th June, I went to me GP for a routine checkup, and he was not happy with my breathing. He referred my, as a precaution direct to the local combined assessment centre for tests etc, and he wanted to rule out a blood clot on my Lung.

I blamed it on my anti rejection meds Advagraf and MMF, but he wanted it check out.

Following blood tests I was quickly diagnosed with Neuropenic Sepsis, where the White Blood Cells are extremely low, and my immune system at serious risk.

I was immediately placed on IV Antibiotics (after consulting with my Liver Unit), and while this initially helped start to bring my levels up, it didn't solve the problem. They reduced my MMF from 2g/day to 1g/day, but no real luck. Last week they took me off MMF Completely, and slowly they climbed up.

I am now how and no longer have, but I am still Neuropenic Sepsis Neuropenic, but have now been allowed home (16 days, with most in Medical High Dependancy or under Preventative Infection Control Procedures),

I thought I would flag this up in case others have heard of it, or at least to highlight how seriously ill we can get without us even knowing about it.

Take care everyone

[Hidden]

Hi

It's true, you never know what is round the corner. Hope you carry on improving. Take care Lynne

[Isabelle2]

Hadn’t heard of it. Thx for the info. I hope it all sorts itself out soon x

[Kristian]

Hi George,

I had a similar problem about 3 months post transplant. Spent a similar time to you in the hospital too. My white cell count had been low since the transplant but just kept dropping. When it went below 1 I was advised if I got any signs of infection to go to the hospital. 2 days later there I was with a headache and a temperature. So in I went. Had antibiotics and antivirals as they were treating it as suspected meningitis or encephalitis. They also stopped the MMF. My neutrophil count at one stage was less than 0.1 and I suspect yours would've been similar. Even with stopping the MMF the count didn't rise until after the anti-virals stopped. I think that had a similar affect, lol.

It was quite interesting to see throughout the hospital stay that whilst I was off the MMF my ALT was slowly rising. When I left it was just above the upper limit of normal. I restarted taking the MMF when I left but on a reduced dose. This seems to have done the trick as my white cell and neutrophil count have been normal since.

I continued taking the prograf throughout.