Tips for starting mycophenolate?


I can see a few past posts about this, and it looks as if the main issue can be gastro-side effects.

I'm on hydroxycholoquine and 15mg prednisilone atm, and starting mycophenolate today.

Anyone got any tips on minimising the potential side effects when starting? Any other thoughts?

Thanks x

29 Replies

  • I assume your dose is being stepped up gradually. I'm on 1g twice a day now and have had no noticeable side effects at all, despite existing GI problems, I just take it not with food as directed. You should be on a close monitoring programme for other effects through blood testing which will start weekly extend to fortnightly and then monthly as your body adjusts and your dosage is increased. It actually really frustrates me that I do not get to see blood tests ordered by my rheumy, only my GP ones, but I had one of the latter recently and it's certainly dropping my white cell counts - not good, but inevitable.

  • Thanks, cowhide,

    I am following the kind of introductory schedule you suggest. My poor veins!

    Like you, I have pre-existing GI problems, so that is a particular worry - but it sounds hopeful. Thanks again x

  • Most people do very well on Myco, it is extremely well tolerated. It drops my counts slightly which wouldn't matter if they weren't rock bottom already! We are the lucky ones to be prescribed it - it's not cheap. Best of luck x

  • Thanks Clareb67,

    I still haven't been given my blood counts - I guess that is something I will have to get used to following....lots to learn.

    I've been very lucky with the amount of resources that the Welsh NHS has poured into me over the past year. Multiple tests and medications have been given without hesitation or questioning. I've made enquiries from time to time, just to see how much a given investigation or med would have cost had I gone private. Already, I have had many thousands of ££££s worth of treatment!

    Hope it continues! x

  • I know someone who takes 3 g daily (6 tablets) with no ill effects. I doubt my bloods could cope with that so I don't have as much disease suppression as I would like - it's a balancing act.

  • That sounds like a lot. But I guess we get used to it - a year ago, I was stressing over a single steroid I have a pill tray with 6 different meds plus a daily injection. So I didn't turn a hair when my consultant said, "OK, time to start on mycophenolate"

  • Hi, I agree with the other replies. I've been taking Myco for 2 yrs now & sometimes I feel a bit drowsy/sleepy after taking it (only for about an hr). Also about 3 mths after taking it, I had Shingles (for a mth) my Rheumy nurse told me it's quite common when 1st taking Myco but my immune system was worn out from 5mths of chemo for eye cancer/APS & Lupus related. When treatment was successful, I celebrated having life back for about 4 mths & over did it so this lowered my immune system. it reminded me not to take the good days for granted.

    In general, I think the Myco has helped to stabilise Lupus. I tried the hydroxychloriquine & azathiopine which had unsuitable risky side effects. I've adjusted to Myco now.

    Hope Myco works for you x

  • That's helpful, magSLE, thanks. It's quite a learning experience working out what is going on with one's body with these conditions, isn't it?

    Glad to hear your encouraging words x

  • Hi I have been on my I for a few years now, I take 1g in the morning and 1.5 of an evening with food. I gradually increased the dose over a couple of weeks and have had no side effects. Good luck .

  • Thanks tiredmum,

    I'm scheduled to go from 500mg a day to 1gm in these first few weeks. Good to hear that even at your higher dose you've had no side effects. Hope I share that experience X

  • I had taken it before, started on 500mg twice a day...couldn't take it as I had constant diarrhea. On this site, and from a friend I learned they had started on a low dose 250mg twice a day and by adding 250mg biweekly to AM, then PM, over a 6 wk period. My doctor allowed me to try again with this method and it's working fine now (been on 1000mg per day for two months now.). I do have small snack after morning dose, all is well. Good luck.

  • That's useful, Mean-time, thank you. Only day 2 today, so a bit early to expect effects of any kind. Keeping my fingers crossed!

  • Yes, I should have said that I was so nervous of starting DMARDS that my Rheumy started me off oh-so-slowly ie one tablet every other day and allowed me to choose the pace so that I felt safe and in control.

  • What a super-thoughtful rheumy! Oh that they were all so kind...

  • Yes, he is but I had been super-neurotic prior to that point. If I remember rightly, he had his head in his hands saying 'please, take the pills, one every other day is fine but please just take them . . . '

  • Hello. It sounds like we are at similar stages with medication. I was diagnosed with SCLE in Oct/November 2013 and had been taking 2 x 200mg hydroxy a day. But I realised that the disease was still active, my flares were still happening and getting closer together. So this summer I had 2 courses of steroids - both 5 weeks long, 20mg for 2 weeks, then 15mg for a week, 10mg for a week and 5mg for last week. So 10 weeks altogether. This made a huge difference to me this summer with my family. So then my dermatologist said we need a steroids sparing medication - we'll put you on Mycophenolate Mofetil - MMF. So on 19th July I started taking 1g a day (2 x 500mg) and we built it up over about 6 weeks. I am now at 3g a day (so 3 tablets twice a day). I have always suffered GI issues, so these are ongoing and I never know whether they are the lupus or the meds. I wouldn't say these issues have got any worse on the MMF. My dermy has now left and has left me a treatment plan. He says if the MMF doesn't work then we must try Azathioprine. I have had to nap a lot this week. I never nap on steroids. It's so frustrating. I really want MMF to work, as it appears to be a drug that helps a lot of people on here. Fingers crossed. How are you getting on with it now? Best wishes. Wendy

  • Thanks Wendy,

    It's only day 3 on the Mycophenolate for me, but I woke at 6am with heartburn, which has been coming and going since. Hopefully, it's just a random bad day.

    Like you, I am really hoping the MMF gets on top of this problem, especially as I have already been on 20 or 15 mg prednisilone since the end of June - too long!

    I'd be really interested to hear how you get on x

  • I'll stay in touch. x

  • Hi whisper it

    MMF can take up to three months to work so it's a balancing act with the steroids not to reduce too soon. Hope it works for you, it's a good drug. X

  • Hi Misty, Yes, I have a review with my resp. consultant (who is managing this) in a month to discuss how to do that balancing act.

    Thanks x

  • Hi whisper it

    Good luck with your respiratory appointment next month. Let us know how you get on. X

  • thanks misty. as it happens, I spent today in hospital and am now promised an urgent review tomorrow. So I may have news sooner than expected!

  • Hi whisper it

    So sorry your in hospital, hope your sorted soon and you feel better. Fingers crossed. X

  • Hello whisperit...sorry I'm so late joining in: just back from hols & NC (neuro cerebral) ymptoms flaring in reaction to probs on return journey...+ had to post about a prescrip prob so have been distracted

    My experience of MMF cellcept is somewhat similar to the others', but with a twist. Here is a summary:

    -my lupus clinic started me on hydroxy 400mg which helped enough so we knew we were on the right track. Then, within a year or so, amitrip 20mg was added, which helped a bit more

    -within 2 years we added 3 X 4 week 10mg pred tapers because NC symptoms were continuing to flare. These worked well for a year or so, but the effects were too temporary so symptoms were seesawing

    -so we tried adding 1000mg per day MMFC which settled the NC symptoms MUCH BETTER, but aggravated my chronic upper GI stuff (oesophagitis + gastritis) for 5 months. Meanwhile I was advised to always take the doses with food. My gastroenterologist did do gastroscopy again just to check I was ok, which I was, By month 6 the gastro symptoms had settled enough for my usual lifestyle management to manage them ok again

    - since then, I've had to resort to pred on a daily basis to control my NC stuff but the relatively low daily dose of 1000mg myco continues to keep NC symptoms & synovitis & pelvic girdle pain well damped down as part of this combined therapy treatment plan. I try to keep to pred to 10mg & lower and I taper down ultra slowly.

    Meanwhile one of my local lupus buddies was starting up MMFC and developed chronic diarrhea...our lupus clinic eventually changed her onto myco myfortic which suits her MUCH BETTER

    Hope something in there is useful to you

    Hope you'll let us know how you get on

    🍀🍀🍀🍀 coco

    PS I always get my myco monitoring blood test printouts from my GP to enter in my hosp lupus clinic blood booklet

  • Hi Coco. On the subject of bloods - are you monthly or 3 monthly? I'm on monthly but, following a recent GP letter that went out to everyone, it seems that most are 3 monthly. Just curious xx

  • Once we decided I was settled ok on myco, i was on monthly for probably 2 years. In spring 2016 my consultant said 2 monthly now unless results throw up anomalies...but I see immunology every 3ish months too where I usually get tested, so this sort of increases the frequency of tests 🍀

  • Thanks coco,

    That's a useful account, and a good tip about the blood monitoring printouts. Top of my shopping list today is a meds and symptoms diary.

    One of my things is to avoid gastroscopy - I had a bad experience last time!

    Hope your flare is easing now x

  • Probably my GP has to give me these bloods printouts cause my hospital is in a different trust, which means lupus clinic can't see my results on their system. But, whatever, I LIKE having these printouts & would make sure I got them somehow 😉

  • Just out of interest, for how many of you can your GP prescribe mycophenolate for autoimmune disease? I am in Leicestershire and mine is only allowed to prescribe it under shared care for renal transplant patients (not autoimmune diseases) so my bloods go to my rheumy who is responsible for monitoring me and the prescription too. I find this very frustrating as none of those results hit my GP medical record so I never get to see them.

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