Sorry, I seem to do nothing but ask for advice! But I don't really know anyone who has lupus experience and I'm feeling kind of worried by things that wouldn't usually worry me...
I am on day 2 of Cellcept for lupus nephritis and I haven't been feeling so good today. I won't go into too many details, but my stomach is very upset and I've been feeling very nauseous and vomiting a lot. It just comes on in waves like so suddenly, and sometimes I'm hardly able to get to the bathroom in time.
It seems very quick for a side effect! Has anyone else experienced this on Cellcept? And if so, how long did it last? I'm worrying about getting back to work, we are in the middle of a really important bit of a research project and I hate letting the others down.
Lots of thanks in advance!
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November90
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I don’t have lupus but take Cellcept for Myositis with a Scleroderma overlap. It takes about 3 months for the body to adjust to this drug. I always have a dry biscuit when I take this drug otherwise I feel sick. Make sure you read all the information about side effects and perhaps keep a diary of what’s going on if you’re unsure talk to your GP.
Thank you, this is really helpful! I'm also on 3g (6 x 500mg) and I will definitely try to carry on with it, hopefully these side effects will pass. My consultant told me that it is really effective for lupus nephritis, so I really want to try to go on with it.
I haven't (as yet) had any bloating or heartburn really, it's just the nausea and vomiting and in the last few hours (sorry - too much information coming up) bad diarrhoea. I'm trying to keep drinking and eating bits with the tablets, but this sickness is just horrible. My mother in law told my husband that I should try ginger tea and I think it is actually helping - a bit!
Maybe it is just a new med reaction thing? I'm hoping it will get better over the weekend!
Yes ginger tea is great for calming nausea down..good tip!!
I'm on Ciclosporine which is a different immune suppressant I know but I did have the same symptoms as u when I started it. Every dose I would throw up afterwards..funnily enough I never actually threw the drug up!?!?🤔
My advice would to be persist with it because after a couple of weeks my body seemed to accept it n I have had no trouble since!!
I take my meds with a glass of goats milk..seems to help!! If u take yours with a biscuit...maybe treat yourself to some ginger nuts!! Xx
Just reading this comment and wondering if you’ve gone straight to 3g a day? From nothing? I built up from 1g to 3g over 6 weeks approximately from memory. I took steroids during the increase. If you have gone straight to 3g this might explain your body’s reaction? Maybe slower increase is needed? Just a thought. x
I have to taken mine on an empty stomach in the morning. I don't think it shouldn't be taken if you have already eaten something, though I'm sure it's ok if you have it with a biscuit, I have my breakfast about 10-20 mins after taking it.
In the evening I have my dinner and have it around 40mins ish afterwards. This is on my specialist advice as I use to take it at bedtime, it has made a big difference. If I don't follow this I just get the runs all day and night. But stick with it, Cellcept makes a positive impact to the dreaded Lupus!
Best of Luck, Sarah x
Hello. Sorry that youre experiencing those nasty side effects..they do ease..im on 5th month of cellcept..and symptoms have eased but bloating and ankle swelling seems to be an issue with me but the nausiousness has eased..i do get swollen lymph glands in my neck - sore throats but in comparison to where I was before starting the side effects are manageable.. stick with it if you can but obviously seek GP advice of youre feeling doubtful or unsure .
Hi there! I’m an SLE patient and having Lupus has also caused me to have so many allergies to drugs, not only that but allergies to changes in drug brands. Cellcept hasn’t always agreed with me either but I find it so much better than the generic MMF.
I’m not sure having a couple of doses of Cellcept would cause problems, however it’s definitely worth checking out with your renal Dr.
It will definitely put your mind at rest - also you should never have to apologise for asking too many questions about SLE!! I hope you feel well soon xx
Thank you so much for all the advice. I am trying to stick with it! It does seem very soon to get side effects, but the renal nurse I spoke to said it's not unheard of to get them on day 2. I will try what some of you have advised about eating, because the diarrhoea has been horrible The problem is that I feel so sick that I am really struggling to eat and it just comes back up. Interestingly though Krazykat26 I never throw up the tablets either!
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The problem is that I feel so sick that I am really struggling to eat and it just comes back up. Interestingly though Krazykat26 I never throw up the tablets either!
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