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[janann]

Started on mycophenolate yesterday and about 5 hours after 2nd dose I was violently sick. I did on and off through the night and now have strained muscles. Some diahorrea now as well. Anyone else had this reaction?

[Niccigrace]

Hi, I didn’t have sickness but came up in a rash and had serve itching, ended up in A & E and was taken off the drug however, many people take it and are fine on it. Make sure your medical team know it just might not be the medication for you.

[SonyaNME]

Hi Janann,

When I was initially put on MMF I was warned about GIT disturbances as a side effect but was fine. I was diagnosed and given it in Australia and prescribed CellCept which is given in the UK routinely as it is vastly more expensive than generic brands. When I moved to UK they put me on different brands but o reacted to all of them and after fighting it for a while they agreed to prescribe CellCept and I don’t get any side effects.

My rheumatologist was very supportive of my needing CellCept and acknowledged this can be an issue for some people. The GP was very anti and told me I was talking nonsense because they are the ones who pay for the prescriptions. It is not commonly discussed but there is awareness within the medical community that very often generic forms of drugs cause reactions in people (although they all have the same core ‘active’ ingredient, the other ingredients and manufacturing can vary slightly). It won’t be an easy point to raise but worth discussing if they can try you on different brands.

[baba in reply to SonyaNME]

patient.info/medicine/mycop...

"There are several brands of mycophenolate available and your treatment could be affected by switching between brands. Each time you collect a new supply from your pharmacy, please check to see if your medicine looks the same as before. If it is different, discuss this with your pharmacist who will advise you."

[Sara_A]

A lot of these type of drugs cause gastric upset, had u eaten? Prob need to not take on empty stomach.

It can be a side effect and may calm down after a while so I’d speak to ur dr and see what they suggest. If it’s not a severe reaction obviously, it’s possibly worth trying to cope with it as it may calm down. Obviously if really bad I’d stop it!

It’s frustrating as it’s so hard to know and u don’t want to stop before uve given it a chance just in case it is the drug that helps u in the end!??!

It may be a coincidence as there are some stomach bugs going around again if u are in the uk??

[maggielee]

Hi did have a bad stomach to start with, differently take it with something, food wise, sometimes just a glass milk to coat your stomach (if tolerable)... It did settle down for me, but I also noted some food intolerance since starting end sept. On low dosage as my white blood count keeps dropping.... On cellcept... ML

[panda2]

Hello Janann,

Your post caught my eye because I am likely to begin this same medication after my next Rheum appt May 2. I met up with a friend recently whose sister is taking this same immunosuppressant for autoimmune issues. Being very curious about her reaction to it, she said it was the one that made her sister so terribly sick no taxi would take her home from the pub that night because she was vomiting. The *pub* possibly being the key, she thought...? She'd had a few drinks after taking it. Since then she drinks just one drink and has not had the same problem again. Not sure if relevant, but just in case.

Hope you're feeling better now.

Panda

[Buffy14]

Hi , I take myfortic which is a slow release form of mychophenalate and that was better for my stomach although I do still suffer sometimes with diarrhea and stomach cramps . There have been a lot of sickness bugs around recently my family have had it , violently sick for 24 hours and so it may be coincidence and you've picked up a bug like that , I would give the drug another chance and take it as advised in the instructions .

[janann]

Thanks everyone for all the good advice. I was so bad I stopped taking the tabs and went back onto the Azathoprine. My gastritis is settling and I am starting to eat. This has been nearly 2 weeks now so quite a long time. Have phone rheumy nurse for advice and waiting on reply. 😊