Hi recently diagnosed and found it all very difficult.
I have been prescribed Mycophenolate but have read side effects of dangerous infections and cancer causing .
I just wondered if anyone else has used this medication or know actual facts of its safety profile. Any help would be really appreciated thank you
I’ve been taking Myclophenate for about 8 months now.
It suits me better than Azatropine,so fingers crossed.
When I was first prescribed Myclophenate,my sister in law asked me if I wasn’t worried about the side effects.
My reply was that felt so awful that I needed to take some thing.
The thing is all drugs have the potential to give you side effects.
We all have have to weigh up the benefits against potential side effects.
Hope all goes well for you.
Hi.i take 2gms mmf a day and have been since sept last year.like Oshgosh azathioprine didnt suit me in fact it gave me drug induced hepatitis there are risks involved but you are very closely monitored with weekly bloods to start.im on monthly bloods you have to weigh up the risks with the risk of uncontrolled disease long term.as well as sle I have lupus nephritis.my kidney specialist said to me I'd fair better with cancer treatment then I would with a kidney transplant.
I suffered terrible side effects at the start.violent headaches and nausea lasted about 3 weeks.when they increased my dose i got them back again for about 4 or 5 days .nothing since.i usually have short hair and whilst my hair hasnt fallen out as its grown during lockdown it's gone curly.. known as chemo curls.
The side effects were unpleasant but worth riding out.i used to get everything done before I took the mmf in a morning and the headache kicked in as for the nausea which was worse at night I took plain biscuits to bed ( amazing how the dog knows theres biscuits even when hes asleep) 🙄 I also take hydroxchloroquine and prednisone.
Mmf and the other immunosuppressants are very powerful drugs which take at least 8 weeks to start to work.It will also put in the extremely clinically vunerable group should we go back into sheilding measures Good luck x
Hi I've been taking mycophenalate for over a year, the benefits outweigh the side effects but it will get easier. My consultant said they base the dose on side effects, so they lower accordingly.
Don't worry about the absolute worst that can happen when taking this drug the chances of it happening are very very low but they have to tell you. If you read the side effects of paracetamol it can cause internal bleeding the chances are probably 1 in a million but they have to tell you, don't worry mycophenalate is a great drug and has put my kidneys into recession from lupus nephritis, it will get easier if you feel rough on the dose you're taking tell your consultant they will probably lower it.....as for the brain cancer etc don't worry the chances are minimal it's a great drug🙂
I’ve been taking mms for about 18 months now and have been really lucky with the side effects. The nausea wore off after a couple of weeks, but hey, I had awful nausea with my Lupus anyway! Although I’ve got a flare at the moment I have been so much better and life has become worth living again. You can get side effects from lots of over the counter drugs as well, I think I have to rely on chemists and doctors much cleverer than me to know what they are doing. Hope it goes well for you.
Hi, I have been taking MMF for about 10 years now, I have mixed connective tissue disease with CKD and tried all sorts of drugs to start with with no affect or other side effects outweighing the benefits. I now take 1 gm twice a day of MMF and I have to say it has been life changer. My symptoms have settle with just an odd flare. I take with a prednisone (5mg) as well . The side affects sound awful, but I have never had any and the risk of infection although higher, I do not feel it has been a problem for me. If I have had a bad cold /flu for example, I stop the MMF for couple of days and this helps my recovery. I can’t recommend you try this enough. Good luck x
I take 2g MMF daily. This is the second time around for me. It is not 100% side effect free - but of the lupus drugs I have been prescribed in the last 15 years (MTX, Azathioprine) it is the one that works the best and allows me to have the most normal life.
If you are recently diagnosed, you are probably struggling with the idea that you have this ridiculous, incurable illness at all, and can’t quite believe that you need to hit it with something so powerful as MMF. Wouldn’t it be better (a part of you is probably wondering) to have the odd flare, and just look after yourself and try to stay well - rather than fill yourself up with powerful and possibly damaging medication? I wondered the same. I refused all medication for the first few years of being ill, and all I can say is that it was a mistake to do that. It might turn out that you cannot tolerate the MMF - but you do need to take something because lupus is an illness not to be messed with.
So my advice would be to try it for 6 months and see. If you can stay well on MMF it’s a win, and if you can’t then you need to find a drug that works for you. But untreated lupus can be life threatening, and (in my opinion - which obvs you can choose to ignore, as I am not a doctor) no drug at all is not a sensible option.
Hi
I to have been started on mycaphenolate( mmf) recently unlike you I have had lupus for 15 years and been on azothiaprine and methotrexate previously. I agree with previous comments you are having to deal with both a new diagnosis and a drug with potential side effects. On the plus side you may feel better on the meds and I know you will receive great support on here. Good luck. By the way I am on day 4 of mmf and all good so far. Please feel free to ask any questions on here we are all in the same/similar situation and will help where we can. Take care, stay safe M x
i'm taking maximum dose (720 two times a day) for 10 years and never had any issues. Doesn't even make me immunosuppressed (white blood cells at lower normal level). Pretty much whatever makes you immunosuppressed increases your risk of cancer and infection, theoretically. So monitor your WBC every 4 months and see how this medication influences you. Everyone is different so your experience might be different than mine. Also i have to take it with food because it causes heartburn to me.
Hi
I’ve been taking mmf since 2011 and have no issues with it. I have blood tests every 4 weeks to monitor. I had my dose reduced to 1gm a day as I’m now taking methotrexate. Like others have said, the side effects do not outweigh the benefits.
Hope this helps
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