MMF Fragile stomach

[HannahLupus]

Hello All,

I have a bad belly- constipation/ diarrhoea and feel like I am about the be sick but most of the time not actually sick.

My GP thinks this could only be the MMF which is the only drug I am taking (500g x3 a day) he recommended that I drop to 500 x 2 a day and see my rheumatologist as he is the one who prescribed me.

I do feel a bit better and not needing the toilet as much but I still feel it, it’s bearable but I know it’s not right and don’t want it to cause me other problems. My dilemma is that mycophenelate is the only drug that has worked me where my bloods are getting better etc.

I still have a month till my appointment with my stomach and raised the issue the last time I saw him and he didn’t suggest anything really. Would omeprazole worked for this?

Any suggestions please? Has anyone had this what did you do?

Thanks

[Buffy14]

I was told by my consultant that Mycophenolate causes diarrhoea . I was on omeprazole for years and discovered from posts on here that omeprazole can cause diarrhoea and so I stopped it and changed to ranitidine and my diarrhoea has improved , I still get it but nothing like as bad . Unfortunately the strong drugs do have these unpleasant side effects .

[HannahLupus in reply to Buffy14]

Thank you so much I will try ranitidine !

[Lizard28]

Hi, I have a similar prob, I too thought it was the hydroxy, but doc thinks it MCTD causing it. Omeprazole didn't work for me as it caused diarrhoea, I was on steroids and was given that to protect my stomach. When I stopped taking it I was much better. This time I was given ranatide which has been better for me but everyone is different. Worth a try.

[HannahLupus in reply to Lizard28]

Thank you

[Sarahjj87]

Hi

I was on 4 x500g MMF a day. My doctor was reluctant to put me on such a high dose but due to my kidneys it was necessary.

Unfortunately my tummy couldn't manage for long with the high dose so when I saw my doctor next they changed me to 4 x 360mg myfortic a day.

They are still mycophenolate but the gastro-resistant version.

These have worked brilliant and no more tummy upset.

Hope this helps

X

[HannahLupus in reply to Sarahjj87]

Perfect I will speak to my doctor about possibly changing to this if Ranatide does not work

[Hidden]

I’m on the max dose of MMF ie 3 500mg pills twice a day. When my rheum hiked my dosage from 2g to 3g over a 6 week period I had a few months of feeling terrible - nausea with really bad stomach cramps and even worse constipation than my usual.

Then I got a UTI and had to come off for a week while taking Augmentin - very bad diarrhoea. Had to stop and the stomach issues continued to worsen despite being off MMF. In the end I decided it was just coincidence and the Scleroderma doc I saw agreed - so I’ve carried on and the stomach pain has finally settled with the right mix of laxatives. I do think it was related to the MMF but the odd Mebeverine helps. It’s the last immunesuppressant I can try so I’m determined to stay on it - and truly things are much better with nausea and stomach pain now so 🤞🏽

I too take the max dose of Ranitidine and this has resolved my GERD most of the time and gastritis completely gone. Twitchy

[HannahLupus in reply to Hidden]

Thank you, how much is the maximum dose for Ranitidine? I am seeing my doctor today and will ask for this

[Hidden in reply to HannahLupus]

150mg twice a day is max dose. Good luck 🙂

[HannahLupus in reply to Hidden]

Thank you 🤞🏽

[Sarah_H]

I had similar gastric problems & and a really bad gassy stomach & painful gassy abdomen with diarrhoea when I tried to go from 2x500mg MMF twice daily up to 3x500mg am & 2x50mg pm. My consultant wanted me to get up to 3x500mg twice daily & I couldn't cope with the side effects. I spoke to her about it & she said the MMF has a 12 hour cycle where the drug slowly builds up to max effect & then tails off at the same speed so it's important to take the doses 12 hours apart. I've found that the side effects stopped once I did this & I only start to feel bad again if I have to shorten the 12 hour gap because of hosp appts or tests etc. I'm now on the max dose of 3x500mg twice daily.

PS I take lansoprazole for stomach protection because of my steroid dose.

[HannahLupus in reply to Sarah_H]

Thank you. I recently realised the difference when sticking to the 12 hrs, and eating before and a glass of water but still had the bad belly. I was prescribed Randi tone yesterday and my stomach already feels better and not as gassy!

[Sarah_H in reply to HannahLupus]

That's a great result!