Starting cellcept (mycophenolate mofetil) , I would love to hear your experience with this.

[Cherylv]

Do you take it with or without food? Any side effects? If you experience nausea, how long does it normally last after the dose. Any organ involvement?

[DaleDiva]

I am now on 3mg a day in 2 doses. I take it after breakfast and before bed and have no side effects. I have regular blood tests (every 2 weeks) and so far have no organ involvement. In fact I have no side effects at all.

[joannebond360]

Hey. I have been on it for 3 months, had nausea to start with but it has gone now I have got used to them. I take 1000mg in the morning and 1000mg at night. Best I have felt in 3 years and now reducing steroids monthly, currently down to 5mg I have monthly blood tests which are always fine. I don't have organ involvement.

Good luck with it.

Jo x

[Nadsrziguix in reply to joannebond360]

Hi I was wondering why does the mycophenolate have to be take morning and at night? Do you think i will be OK taking one in the morning and one in the afternoon instead? Thanks x

[Hidden]

Have been taking mycophenolate for the past 3 weeks. Was on 500mg twice daily, now up to 750mg. No side effects at all, no real benefits yet but all these auto immune meds can take up to 12 weeks at the right dose to make a difference.

Still on 8mg of steroids and struggling to reduce to 7mg. Very hopeful that mycophenolate is going to make a big difference!

Best wishes

Keyes

[Purpletop]

I've been on it for almost a year - I am now at 1 g a day . I take 500mg at 10am and 500mg at 10pm - regardless of when I eat. Side effects included ectopic heart beat during the first few months but those went away in the main, eye twitching (not every day and not continuously) and sometimes muscle tremor. I've never experienced nausea.

But huge improvement in stamina and energy levels. Improved liver function tests after few months on it. Lately I've started to have few gastro issues - heartburn and tight throat. I'm intending to see the gastro specialist about it but he will probably give me omeprazole for a while. At one point I tried increasing my dose to 1.5g per day but I had ferocious headaches, so I went down to 1g per day. If I need to increase again, the rheumatologist said to do it in smaller doses but at the moment I remain at 1 g.

I have blood tests every 4 weeks, sometimes 6 weeks, as I choose.

[Purpletop in reply to Purpletop]

Sorry, I forgot to add weight loss but that stabilised after 2 months but I can't put any weight on now - which isn't bad

[Cherylv]

Thank you all for replying. I am not so nervous now about starting it!

[tiredmum]

Morning, I have been on it for 2 years and MMF is amazing.

I take 1mg in the morning and 1.5mg in the evening, I built the dose up gradually over a few months, if I take a higher dose it gives me terrible diarrhea.

It has helped with my Lupus symptoms considerably and I am finally managing to get my steroids down to 12mg from 30mg.

The only thing I have found is that I have become intolerable to heat, anything over 18 degrees and I feel weak and nauseous so we have bought air con for the bedroom and I take ice packs every where I go with me.

Good luck with it.

[ShannonB]

I have been on MMF since last July and like many others here have found it to be soooooo helpful. I was really struggling and have now been virtually flare free since August. I am still on Hydroxy and have tapered my prednisolone to 3mg. I'm only on 1000mg / day of MMF, and I take them 500mg morning and night. Morning I take with breakfast and night one right before bed, no food. I don't seem to have any issues at all with them. The only annoying thing really is the monthly bloods but so far so good on those. Good luck and I hope you see good success!!!!

[ShannonB in reply to ShannonB]

I forgot to say - the first couple of months I had a lot of breathlessness with the drug but that has gone away (I even forgot about it!! :)) But at first I found it a bit troublesome. Stick with it if you see this, it might go with time.

[Tiggers1]

Hi Cherylv , easy for me to say , but don't be nervous about taking it ! Cellcept is a wonder drug as far as I am concerned . In the beginning I was nervous too, but been on it a year or more now at 2grms a day ! I find taking on empty tummy best especially first thing , but the nausea may not be this drug. I too have regular blood test usually 3 weekly now , but I can feel real improvements with it ! Dont be scared hun, bite the bullit and get it down ya you will feel the benefits I am sure ! Give it a month to feel any changes tho ! Good luck !

[Tiggers1]

Opps ! Meant to say about the heat too ! I find I can burn even with factor 50 !!! So take care there

[Renu]

Hi, I was on MMF for about a year. The only side effects I experienced were weight loss and tummy ache. Otherwise, I felt well on it, and less fatigued. I have now stabilised and am happy to say that I have come off MMF and back onto aziothioprine; 1 daily with hydroxyl and asprin. I am so pleased that this drug helped stabilise my lupus and that I have come down from 70 something tablets a week to 40 something! This is fantastic progress and nice to have a "good" period instead of a "flare" for a change.

Renu xxx

[Babygirl1955 in reply to Renu]

Do u wear a mask when u out in the streets? I work at a hospital and I was wonder should I go back to work while taking MMF?

[IMillar]

Hi, I have been taking CellCept for over 6 years after a kidney transplant. Some diarrhoea at first but split up the dose to 250mg three times a day. Going well. Just see my consultant and bloods every 3 or 4 months. Better than Azathioprine.

[artemis5]

Hi there, the only side effect I had was horrible migraines.. I didn't get any benefits anyway so they switched me to methotrexate.

[Bebe76]

I take 1.5g twice a day. Started at 500mg twice a day and increased slowly. It works much better for me than azathioprine and liver enzymes are stable. No organ involvement. Have lost weight due to lower appetite but only since increasing from 2g to 3g daily. It took 3 or 4 months to feel a difference with each increase in dose. Also been told to take on an empty stomach. Good luck!

[Heights69]

Hi

I take 6x 500mg a day. I take 2 in morning with a big breakfast, 2 with lunch and 2 at night. If I don't do this I get terrible stomach cramps. Full belly and get no issues, touch wood!

Been on this drug for 7 months, no other issues that I have noticed. Hard to tell if it is MMF or steroids causing the side effects. Good luck.

[diane1711]

Hi, I have sle, syrograns and vasculitis. I am currently on cellcept as I have not tolerated various other immunsupresants. The main issue I have is chronic nausea which is really awful. I've tried taking it with and without food to no avail. Hope this helps.