stopping mycophenalate when you are unwell?

[Andfiona]

hi all i’ve got lupus nephritis, sle and lupus profundus. I’ve been advised to stop mycophenalate by rheum for 7 days due to gastro problem. I should also have Antonio but they are out of stock at the moment, Stopping mycophenalate feels very scary as have never done this. Have you ever had to stop mycophenalate when you were ill and what kind of impact did it have on your lupus? I’m worried that having been really well, I’m going to have a flare due to not taking mycophenalate. Thanks for reading

[Andfiona]

* antibiotics not Antonio!

[Spanielmadlady]

Hi.i take 3gms mmf and have had to stop it on a couple of occasions in order to take antibiotics.it made no difference to me.immunosuppressants are slow acting drugs so a break of 7 days shouldn't alter anything .hope you feel better soon xx

[Andfiona in reply to Spanielmadlady]

thanks so much sml hope you are well

[Spanielmadlady]

Lupus wise I'm ok at the moment thanks but Im on crutches and i've got my right foot in a boot after 2 sprains in 3 weeks 😖 .just had mri to see if it's ligament or tendon damage 🤦‍♀️.Keep smiling big hug 🤗 xx

[ange726]

Hi Andfiona

I have CNS Lupus and I come off my mycophenolate (1000mg a day) every time I'm fighting a virus and go straight back on when im better and it's been absolutely fine.

Nothing to be nervous about. Just make sure you follow what your Dr says.

Good luck and hope you feel better soon.

[Maddymay65]

hi Andfiona

I understand your trepidation stopping mycophenolate . I take it 500mg tds, and have done for over 2 years and also feel quite well on it .

I caught covid back in july 22 and have had 3 infections since. So had to stop . In my personal experience I have had mild flu like symptoms and felt a bit unwell but once I got back on it I picked up . Once it happened the first time I took it easy the second time rested up and treated it like mild flu and it was easier.

Hope this helps , be kind to yourself, take care M x

[Babydriver012]

I’ve current got a stomach virus so ive been off Mycophenolate for three days now and I’m ok. I was told by my rheumatology nurse to always stop mycophenalate whenever I’m I’ll.

[lingdings]

Right at the start of the pandemic I got sick with some kind of respiratory thing. I was told to stop it for 2 weeks or until my symptoms resolved. Since my symptoms didn't resolve, I ended up being off it for about 4 weeks which resulted in quite a bad lupus flare up. I would say to keep an eye out for any new or familiar flare up symptoms and make sure you keep in touch with your rheum team. You don't want to be off the MMF for too long.