I posted a couple of days ago wondering if some of my recent symptoms were the result of a reaction to mycophenolate. I've just come back from seeing my respirology consultant and thought I would share the outcome:
The history is that I was started on Myfenax (500mg daily) about 3 weeks ago. Four days later, I developed chills and feverish feelings, accompanied by nausea. My temperature remained normal. After a week of this, I was sent into hospital for a full work up. No infections were found, so it was suggested that I drop the MMF for a bit. For the first 3-4 days after, I continued with the same symptoms, but then they eased. My rheumy then said to restart the MMF. All was well for a further 4 days, when I abruptly came down with uncontrollable shivering, hot flushes and nausea - and no sleep!
I guessed it was the myco, but the drug info leaflet in the pack doesn't clearly identify these symptoms as possible side effects, so I was uncertain what the problem really was.
When I saw my respirology consultant this morning, he was clear. Flu-like symptoms are typical of mycophenolate intolerance, he said, and if they are severe, it's an indication that mycophenolate is not for you! The fact that I had a resumption of the symptoms after a repeat challenge made it very likely that this was the cause.
So - no more MMF for me!