Any experience?

[Saralife]

Hello

Two weeks ago , my Rheumatologist add Mycophenolate to my drugs. Wanted to ask if anyone here is taking some and for how long have you been taking it?

Side effects?

[Adnerys]

I been taking it for more than 2 year and the only side effect that i have experience is the lack of appetite but besides that everything feels good.

[Saralife in reply to Adnerys]

Thank you🙌

[misty14]

Hi drums life

I took Myco for a long time without any problems. It's a good drug, better tolerated than some of the others. Just watch out for diorrhea when you first take it but it should settle quickly. It also improved my condition specially the arthritis. Best of luck with it and I hope it really helps you. X

[Wendy39]

Hello

I started it in the summer of 2016. Over about 6 weeks I built up to 3g a day. I stayed on this until September 2019 when it was reduced to 2g a day.

I have to say that it suits me. It definitely helped my symptoms and I’ve tolerated it well.

You have to gave your bloods monitored. On starting it, bloods were weekly, then two weekly then monthly. I’m now on 3 monthly.

Have you used the search facility on this site before? If you look for mycophenolate mofetil u think you’ll find many LUPUS UK posts, as many here are on it and often it is raised.

As with all DMARDS you will find some suit some people but others won’t get on with it. Sometimes it’ll work for someone but then 10 years later it’s not so true effective and they have to try something different. Unfortunately lupus drugs are very much trial and error.

We’ve all been there and been anxious about starting what we would normally consider a strong drug. But it’s a leap of faith, after doing all of your homework, like you are now.

Look at the side effects on the leaflet so you know what to look out for. Diarrhoea can be common.

Good luck!

Wendy

[miccika1]

Im taking it for about 10 years. I take it after i eat as it might upset the stomach otherwise. You might not notuce anything special . Apperently it takes a few month to start working and it will help you lower steroids.its especially good for pulmonary involvement

[Saralife in reply to miccika1]

10 years awww 😢💔. What about the fact that u can't have a baby while u taking this medicine?

Am 25 years and was diagnosed 2 years ago at the age of 23.

[miccika1 in reply to Saralife]

Im not into babies so not an issue with me, but if you are the drug does stay in the body for quite some time so you will need to stop it if you decide to have a baby . I believe at least 4 month before you want to get pregnant.

[tiredmum]

I have been taking it for quite a few years. I couldn’t tolerate the full dose of 3g a day but take 2500mg in stead. It irritated my stomach too much and made it very painful. It’s made a huge difference to my Lupus, I hardly ever get rashes on my body, chest pain is less frequent, reduced hair loss, joint pain not as severe. You have to have regular blood tests, weekly at first but I am now monthly. It’s well tolerated by most people. Good luck on it.

[debbiecoombes1]

I've been tracking myco for about 9 yrs now couldn't tolerate anything else it works for me no issues only one I couldn't do without it

[tree_shadow]

Has been working for me for last few years.