Mycophenolate fail???

I am wondering if anyone here has started mycophenolate (MMF) but had to abandon due to side effects?

I started about 3 weeks ago, but after a few days, grew so unwell that I was sent for emergency assessment at the local hospital. The main thought was that I might have an opportunistic infection, but tests - including a full body CT scan - turned up nothing.

My chest consultant suggested suspending the MMF as a precaution. I did this, and over the next few days felt gradually somewhat better. 5 days ago my rheumy instructed me to re-start the mycophenolate. Last night, I got a drastic re-appearance of the same symptoms that led to my hospital admission - nausea, sweats and chills, racing heart, headache, extreme fatigue.

I'm about to see my rheumy again next week. I want to ask him about my suspicions, but meanwhile, I wonder - does my story sound at all familiar to anyone - who has been unable to tolerate MMF? Any other thoughts?


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  • πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹ am so sorry you're having this trouble. I think you will get good replies. As you know, trying out new meds can be a true "trial" 😟. I nearly stopped MMF cellcept because it badly aggravated my chronic upper gi conditions, but instead of stopping, we made my increase in dose go ultra slowly...I was lucky: after 5 months, my probs settled down, my body adjusted & I've benefitted from daily myco cellcept a lot so far fingers crossed. On the other hand, a close lupus friend whose issues are somewhat similar to mine did have to stop MMF cellcept & change to myco myfortic because her lower GI couldn't tolerate MMF. She is doing OK on myfortic

    πŸ€πŸ€πŸ€πŸ€ coco

  • Thanks, coco,

    I'm keen to get onto myco, as so many people seem to do well with it. But I guess we have to play the cards we are dealt! x

  • Ooh, I've just seen a post you made some months ago about myco and sleep, coco. I didn't mention this but YES! Restless legs and no sleep too! Interesting to read your experiences with amitriptyline and the timing of myco doses.

    I have been following my GP's suggestion to drop my amitriptyline (prescribed for leg pain years ago) and the instruction on the myco information sheet to take the myco at least an hour before meals (or two hours after). Obviously, this is not what worked for you at all!

    Seems like we have to work this stuff out by painful trial and error. So your posts are gold!

    Thanks again,


  • πŸ˜†πŸ‘πŸ‘πŸ‘πŸ‘πŸ€πŸ€πŸ€πŸ€πŸ˜˜

  • whisperit and Barnclown, I had not made the condition with disturbed sleep but yes, when my dose was nudged up recently, I did notice that I was waking at 2 am and then not getting back to sleep but there seemed no reason. A battery of infections have forced a dose reduction and I am sleeping once again. So interesting x

  • I was prescribed a large daily dose of MMF after spending time in hospital for my Cerebral lupus and inflammation in my kidneys seemed to be working well and bloods better but now on hold as liver didn't like it.

  • OK, thanks. I've just been to have my bloods done (again). It'll be interesting to see if any shows up.

  • You have my sympathy, I had something similar with methotrexate. I awoke with the worst headache imaginable and collapsed in the bathroom.

    Next time I woke up I was in hospital, having a brain scan, which showed nothing, well there was a small brain in there, but no haemorrhage.

    I've been OK on cellcept though, but when I switched to myfenax the morning stiffness in my hands got steadily worse. I was very nauseous as well.

    I hope get in sorted out.


  • Hi Whisperit, I was started on 2+500mg of cellcept which didn't seem to make much difference to my symptoms. Was increased to 3+500mg & I noticed it helped my fatigue & seemed to lift my mood. With a better mood the pain is more tolerable I find. I had the energy to do more little jobs around the house. I did find that when it was increased to 4+500mg I came out in a rash, developed insomnia & was forever at the loo. My dose is now 3+500mg a day, it seems I can't tolerate any higher a dose. I'm still at the loo alot to pass water. But it's only for a couple of hrs after taking cellcept. I'm still waking earlier than I'd like, but then the less fatigue compensates for that. Hope you find something soon to help you x

  • Just saw my resp consultant. Yep, it's the MMF. I will write a separate post with more details.

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