Taking MMF - does it make you feel sick and encourage you to visit the toilet a lot

[jimbo1605]

Pooh bear (wife) started MMF 4 months ago and all was going well until recently the bottom seems to have fallen from her world (or the world from her bottom - sorry old joke)

Thoughts, experiences, causes and suggested solutions welcomed.

[miccika1]

Seems unlikely that would happen 4 months after starting mmf. Side effects usually appear earlier.

[jimbo1605 in reply to miccika1]

Hi, One thing I forgot to say was that her dose was increased 5 weeks ago and she was off MMF for 2 weeks because of a chest infection and the problem was when she returned to it.

[Barnclown]

Hello again jimbo!

For what it’s worth:

When one of my greatest local lupus friends (a V experienced & knowledgeable patient) had relatively similar probs come on during her first year or so on myco cellcept, she told her medics & they all agreed she’d stick these gastro probs out long enough to make certain this wasn’t her body going through stages of adjusting & adapting to myco cellcept’s type of chemical action.

When things didn’t settle down/improve our lead rheumatology consultant switched her to myfortic which suited her much better and gave none of these side effects. Myfortic’s chemical action is apparently different to myco Cellcept’s.

Glad you’re keeping us posted

Wishing you both all the v best

🍀❤️🍀❤️🍀❤️ Coco

[jimbo1605 in reply to Barnclown]

Barnclown, Lovely to hear from you and pooh bear (more like poohing bear now though) sends her best.

We will talk to the local rheumy on tuesday and suggest myfortic.

thank you for your help again

[Lintilla]

Hi Jimbo,

This happened to me after an MMF dose increase and was totally unmanageable. Otherwise it was dealing very nicely with my disease.

The solution for me was the same as Barnclown mentioned - a swap to Myfortic. From what I was told, Myfortic bypasses the gut and is metabolised into the effective drug by the liver, so it avoids the issue. I've been settled on Myfortic for a couple of years with no issues, and now take the maximum dose they'll allow.

I think it's worth contacting your wife's Rheumatology team to try to get a quick review. This is a well-known side effect off MMF so they shouldn't be too surprised and should be able to come up with an acceptable alternative.

Wishing you all the very best.

[jimbo1605]

Hi Lintilla,

Thank you so much for your excellent and really helpful response. We are going to talk to the doc on tuesday.

[miccika1]

Also make sure the medication is Delayed Release. Those should be easier in case this medication is the cause of side effects. Does you medication has DR at the end of the name?

[Hidden]

Hi jimbo, I currently take mmf tablets twice daily and I would say that about a week or two after starting them I have found myself visiting the toilet 3 to 4 times daily, all usually in the morning due to this tablet. My consultant says he may reduce the dose next month off after another dose of rituximab as he's unsure if the mmf is working or it's the rituximab that's doing the job instead. My wife jokes that I have shared in andrex due to this but I guess we just have to live with it just now. I did speak to a nurse when I was in getting a biopsy a few months back and he says he sees the side effects like this all the time and he always tries to administer a tablet to help combat this.