Mycophnenalate

[Neiluk75]

Hi all.

Has anyone else struggled when starting this drug? I started 6 weeks ago and as soon as I hit maximum dose I started a stomach cramp that was 24/7 they ran loads of tests and stopped the pills. The pain went so they started them again. I've hit maximum dose again and the pain has returned. Really annoying as it was dealing with the lupus symptoms a lot better than aziathoprine

Anyone had the same issue?

[Hidden]

I have had some mild nausea and I suffer from IBS-c or neurogenic stomach issues anyway so it's difficult to know. But in the end Mycophenolate was not the culprit for my tummy problems - it was just an unfortunate coincidence. When you say the maximum dose within 6 weeks what dose do you mean? I think I got up to 2000 over 6 weeks perhaps - but now on 3000mg which is the maximum dose.

[MEW53]

NeilUK75,

I've got scleroderma and I take 1000mg (5mls) night and morning. I've been on this drug for 2 years and it has really improved my health. I was on 2000 mg twice a day to start with and then over a long period of time I dropped to 1000mg.

It takes a long time to get used to this drug before it has an effect on the body ( 3 months for me). Sometimes there can be other factors for discomfort, but it is quite a task getting the dosage right. Best to see your rheumatologist about it.

[misty14]

Hi neiluk

You have to be careful with Myco and stomach problems including diorrhea so your doctors were right to stop it. Sorry it's happening again having re-started it.!. I do think you've maybe got to maximum dose too quickly. Usually the doses are increased with consultants say so over a longer period of time not six weeks as they're used to manage flares!. You do need to discuss it with your Rheumy. Are you due an appt?. All the best.

[Melba1]

Hi, I recently had problems with this drug too. Fine at the start when it was just one tablet, then felt sick and palpitations once started two a day then had a horrible reaction with 3! Very sick, breathless, fast heartrate, shaking and shivering. My rheumy stopped it immediately and said that happens in 5% of cases but think more people have mild upset tummies/nausea with it just at first but your constant pain with cramps sounds horrible and probably not something you can/should just keep going with

It may be that the maximum dose suitable for you is less than the one that's giving you the pain? So if you were OK on one pill less a day (3 x 500g probably?) then that might work? Hopefully you can get it sorted.

Can I ask if the azathioprine didn't work then please? That's the one I've been given in place of the myco and start tomorrow!

[Neiluk75 in reply to Melba1]

Yeah they are the same symptoms. The aziathoprine was ok but I still needed too many steroids along side it so they decided I needed a more effective one. Hence starting on mycophenlate. I've no idea which they will suggest now

[Freckle1000]

Hi,

I had horrible gut problems - sounds similar - really freaky cramps - with the normal Micophenolate.

I was put on Myfortic instead - or (mycophenolic acid 360mg in each tablet) present as 384.8 mg Micophenolate Sodium. Micophenolate sodium for short ( I think ?) Comes in differing or smaller doses.

It should be reasonably easy for a specialist to convert the right dosage for you.

It fixed the problem for me.

Essentially the same stuff - just at a different stage of (drug metabolism) (I think ?)

It is a way better drug for Lupus.

[1sam]

Hi dear. Sorry you are having problems with the meds. I'm only at 1500mg daily but the first year was rough on my stomach. I take the pills only after meals, never on empty stomach. I had to modify what I eat, spicy things, pasta and coffee are not good for me anymore. Hug.