Mycophenolate mofetil- CellCept : Hello, I hope all... - LUPUS UK

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Mycophenolate mofetil- CellCept

MadT profile image
MadT
13 Replies

Hello,

I hope all of you are safe and well!

I just been prescribed Mycophenolate Mofetil on an increasing dose for next month and never taken this before. What is the best way to take this medication to fully work 💊- empty /full stomach?

Many thanks 🙏

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MadT profile image
MadT
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13 Replies
Spanielmadlady profile image
Spanielmadlady

I've been on mmf for 18 months.i take mine with breakfast and tea.side effects weren't pleasant. I also had to increase my dose. I had violent headaches and some nausea .I asked if I could delay my increase as my grandson was due and I couldnt drive with such bad headaches .when I increased again I got the same side effects again but for shorter length of time.i then had to double my mmf in the December and managed to without any real issues.the other issue I had was cuts any cut regardless of size went septic so always had plasters and antiseptic to hand.have no issues at all now.it does make you extremely vunerable to all bugs ...not just covid so avoid people with colds,flu,stomach bugs etc if life ever gets back to normal.be patient it takes months to work bloods are usually weekly then fortnightly then monthly.im now on monthly bloods.when your consultant hands prescribing over to your gp be sure to get your bloods done about 5 days before your script is due as the gp wont give you prescribe until theyve seen your bloods.ive had mine done today so they will be back tomorrow .one last thing changing brands is a big no no you are supposed to stick with the same brand.i was forced to change mine last year after my brand went out of production.i reacted badly to it so they had to switch me again to another which has been ok in the end but it wasnt pleasant. good luck I hope it helps you 🤞 xx

MadT profile image
MadT in reply toSpanielmadlady

Thank you, I will keep in mind all the points you've mentioned above. I can't say I am experiencing any side effects as yet but I've been only taking them 5 days now and still have to increase the dose over the next week until I reach 2000mg. I was diagnosed with SLE last year and been on a decreasing prednisone dose until beginning of march , only to find out that it flared up in my kidneys now and back on high dose prednisone and CellCept to get it under control. I have a review in one month to check on results. I have high hopes on this med so thank you again for your advice. xxx

CSLO profile image
CSLO

I started it nearly five months ago, increasing the dose after two weeks. I had absolutely no effects from it at all for four months, neither positive or negative, but then I noticed considerable improvement in my symptoms. It has helped enormously with fatigue, joint and tendon pain, rashes, swollen glands and with the general horrible malaise that I had daily.

I always expect good things when starting a new med and often find unwanted side effects, if any, last for a short period before disappearing. I have an each day at a time attitude and fire fight as necessary. From a disappointing slow start with this med, I feel as if I'm now reaping a benefit.

I started taking this twice a day with meals to try to avoid upsetting my digestive system but as there was no problem I now take it at the same time as other meds which I have to take an hour before meals. The drug directions/instructions state that it makes no difference but I found that some research had suggested it should be taken with food.

We're all so very different but we can't know whether something will work for us unless we try it. I really hope that you find it hugely beneficial too.

Good luck and fingers crossed for you!

MadT profile image
MadT in reply toCSLO

thank you , I do hope I won't have any side effects and you are right is a case of trying to find out what'll work for us. I will try either way on both empty/full stomach and hopefully it will return some great benefits even though the side effects sound scary even though only thorough suppressing the immune system and what could bring with it. Or maybe I am to new in dealing with all of this having only been diagnosed last year. x

Bebe76 profile image
Bebe76

I take it on an empty stomach. More information here:

mayoclinic.org/drugs-supple...

MadT profile image
MadT in reply toBebe76

thank you for the link attached , very useful information

Loopyru profile image
Loopyru

I was on this for many years and just used to take at breakfast along with all my other meds. When I first started taking it I felt very sick for about 6 weeks but persevered and eventually the nausea settled down, so stick with it. Remember you need blood tests every 3 months at first. Take care xx

MadT profile image
MadT in reply toLoopyru

The more I read about it, it sounds like the nausea/sickness is the most often side effect encountered but also settles down after a while. Which is great news if this drug will work for me overall. thank you. take care xx

WinterSwimmer profile image
WinterSwimmer

As someone above has said, Cellcept is supposed to be taken on an empty stomach. I take mine late at night and mid-morning. I find it is the best lupus drug of all the things I have taken - MTX, azathioprine, prednisolone. I am off steroids. I take 2g of mycophenolate daily and 400mg hydroxychloroquine. I feel OK. There were side effects when I first started taking it, and I still occasionally get nausea after the late night dose.

Here is the leaflet:

cellcept.com/patient/what-i...

MadT profile image
MadT in reply toWinterSwimmer

I don't have any side effects yet but only taken this for few days so far, so plenty of time for me to get these, I suppose . I am back on high dose of steroids unfortunately and with introduction of Cellcept as well as 300mg hydroxychloroquine daily. Thank you for the leaflet link attached, it gives more info than the one I had in the medication packet.

WinterSwimmer profile image
WinterSwimmer in reply toMadT

Good luck and hope your flare subsides quickly. That combination ought to do the trick in a month or two (or at least start).

I’m currently on 4 x 500mg MMF and have been on this regime for 4/5 years. Was warned by doc about flatulence💨.

Yes, it’s a problem (for me) but the stomach squelchy noises and churning seem to be daily and can be embarrassing 😢.

But this regime keeps the dreadful lupus symptoms reasonably managed and the flare ups less. So I guess I have to put up with it.

MadT profile image
MadT in reply to

thank you for the warning 😀 As you rightly say , out of the two I'll definitely pick the 'wind' if I had a choice . take care x

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