Are there side effects on Mycophenolate?

[Maddymay65]

I have been azothiaprine for nearly 10 years but my consultant has now decided to change my medication to mycophenalate and I am a little concerned about side effects as I have heard there are a few. I have had none on azo. Anyone on 50mg twice a day for lupus I would appreciate your thoughts?

[Spanielmadlady]

Hi I'm on mycophenolate for lupus.i have been for 9 months.i suffered terrible headaches at first I didnt lift my head off the sofa for 3 days I had to run around and get things done before I took it in a morning and the headache kicked in.it last 3 weeks.i had to increase my dose but my daughter was due to give birth so I asked for a delay as I couldnt of driven with a headache like that.when I increased again i got them back again for about 5 days.i also suffered nausea especially during the night so I used to take a packet of plain biscuits to bed and munch on them ....the dog loved it he used to appear out of nowhere 😁.now take 2gms a day and still have bloods every month usually 1 week before I need to request my prescription from my gp.the other side effect I've had is my hair......it felt as if I lost more then usual at the start but now I have chemo curls as my hair has grown during lockdown it's gone from poker straight to curly.the side effects do ease if you can ride them out.i started on 500mgs,then went up to 1mg now 2gms .your dose is alot less then mine so fingers crossed you wont suffer with side effects good luck x

[Maddymay65 in reply to Spanielmadlady]

Thank you for that, that sounds like what I have heard and pretty awful tbh. I checked my dose. It is 500mg going up to 1000mg. I already suffer regularly from migraine so we will see. I had heard about hair loss and have had that before but never to point it came back curly could be interesting 😊. I would have happily stayed on azo but apparently long-term use puts me at risk. Do you feel better now you have been on it for a while, do you think the side effects are less? Thank you for your help. M x

[Spanielmadlady in reply to Maddymay65]

Hi Maddy.i started off on azo and managed 7 weeks on it before I started being sick.it had given me drug induced hepatitis so I was taken off it and had to wait for my liver to recover before I could start mmf.mmf is more easily tolerated then azo.im sorry to hear you lost your hair on the past.i didnt lose my hair I had a short pixie cut in January and it's now curly.apparently chemotherapy drugs can do that.i started on 500 mgs once a day so the headache eased but when I went up to 500mgs twice a day I had the headache most of the time as it was just easing when it was time to take it again.i also take hydroxchloroquine and prednisolone.it was hoped the mmf would help me come off the steroids but that hasnt been achieved just yet.i dont suffer any side effects now I still get the odd bad head but I think its sun related rather than the mmf.since being on the meds I've had no hospital admissions or big flares.it does however put you in the extremely clinically vunerable group so you will have to be extra careful .it wasnt pleasant but worth riding out if you can .best wishes xx

[Freckle1000]

Hello Maddy,

It's not a very large dose - so you shouldn't encounter too much trouble at all.

One of my specialists described my array of medications - and the way I've adapted to taking them over the years as balancing uppers and downers.

Mico for me is an upper - rev's me up a tiny bit - ( and I can use the energy 🙂 ) but no other real problems.

It's been a really great medication for me and it's helped keep my lupus stable.

I transitioned from Azathiaprine myself - but Doctors have always made clear that I have the option to go back on it instead of the mico whenever I want.

[Maddymay65 in reply to Freckle1000]

Hi Freckle1000

Thank you

I am actually starting on 500mg then up to 1000mg, I get numbers muddled up haha. I think I am going to try it and see how it goes. I don't think going back on the azo is an option as I have been on it too long unfortunately. So mmf is best option. Glad it helps you. M x

[ShannonB in reply to Maddymay65]

I’m on that dosage of MMF and have been for 7 years- It was a life changer for me for at least 5 years and I didn’t have any noticeable side effects except more colds. I take loads of Vitamin C and that has now settled down. I hope it helps you. Definitely worth a try.

[Maddymay65 in reply to ShannonB]

Hi ShannonB

Thank you for that, so pleased it worked for you. I am hopeful and I will take on-board the vitamin C. Fingers crossed M x

[Maddymay65]

Thank you for all comments

Gosh I have not started this drug yet and the side effects just sound better and better 😂

Has anyone tried peppermint oil capsules for the flatulence/gassiness? M x

[PositivelyLupus]

Hiya lovely, I'm on Mycophenolate (MMF) 1.5g twice a day, I started in January 2020 and noticed hair loss around 4 months in. I also was on MMF a couple years ago but I found it hard to keep up with the twice a day dosage and the HUGE tablets they come in, I still struggle but make a bigger effort to take them properly now as my Lupus is affecting my kidneys now. But that's the main side effect I've had I think . Last time I was on it a few years ago I got pericarditis but I don't know if it's due to the medicine or just lupus. hope that helps and good luck xxx

[Maddymay65 in reply to PositivelyLupus]

Morning Positively lupus,

Thank you for your reply. I am concerned about hair loss as it has happened before so that is worth knowing. I know that the main thing is keeping well. Sorry to hear lupus is now affecting your kidneys, this disease is unkind and frustrating at times. I start it tomorrow so fingers crossed and forewarned is forarmed I think, stay safe M x

[PositivelyLupus in reply to Maddymay65]

Thank you. Yes, I'm now on Tacrolimus since last week in combination with MMF and prednisone to help tackle my kidneys. But both MMF and Tacolimus are known for hair loss/thinning, I guess it's a small price to pay to help the Lupus! Stay safe and good luck xxx

[cowhide]

i take myco for scleroderma rather than lupus but have been on it for about 4 years now.

I am on 2.5g/day and probably going up to 3g. I have no noticeable side effects other than possibly an increase in minor infections (eg a minor skin wound getting infected, but I am a farmer so in a dirty environment).

This is probably due to a combination of the myco dropping my white blood cell count (which is normal for this drug) and poor circulation due to Raynauds. Good luck with it.

[Maddymay65 in reply to cowhide]

Morning Cowhide

Thank you for that, interesting to hear about minor infections as that already happens on azo, we will see. Take care M

[tiredmum]

I couldn’t tolerate azo so was put on mmf instead. I gradually built up my dose from 500mg per day to 2500 per day. Any more gives me an upset tummy. Apart from that no side effects at all. It has been a huge help. You have weekly bloods at first then fortnightly then monthly. I am also on Mepacrine, hydroxy and prednisolone. I still have symptoms but no where near as bad as they were. Good luck with them x

[Maddymay65 in reply to tiredmum]

Morning Tiredmum

Glad to hear it helped and I am hoping it helps me. I have peppermint oil at the ready for tummy but we will see.

Thank you for advice. Take care M x

[Bebe76]

I've been on the highest dose f MMF for 7 years with no major issues. Mostly pain free now due to this drug. I have a slightly low white blood count but that was an issue before I started MMF as well. You will need to get a full blood count monthly to make sure your counts don't drop (it is a common side effect ). Everyone reacts to meds differently so you won't know until you take it. I hope it helps you.

[Maddymay65 in reply to Bebe76]

Thank you for that, interesting to hear about the pain free side of things. I have a lot of problems with pain and nothing really touches it on a bad day M x

[maggielee]

Just to add to all this good feedback, start with 1 a day and build up to two or 1000...your body will need to adjust to it. I take mine after I have eaten something & with my hydroxychlorquine & helped me with fatigue etc.

My white blood count was low to start with now just within the acceptable parameters...which took a while...

so was back down & up to two a day.

I felt my hydroxy was more of a problem with hair 'shedding' more than loss.

I hope your ok to take...ml

[Maddymay65 in reply to maggielee]

Thank you Maggie Lee, I also take hydroxy so will certainly take them together.

Interestingly I have no hair shedding with hydroxy.

Thank you M x

[miccika1]

I take 720 mg two times a day for many years. No side effects.

[misty14]

Good luck maddymay for starting MMF soon. I've taken it for years and tolerated it very well. It's also helped my symptoms!. You may get diorrhea to start with but it should calm down quickly. I do hope it helps you and you get on well with it. Keep well and safe Xx

[Maddymay65 in reply to misty14]

Thank you Misty14 I feel a lot more positive about it than I did, hope you continue to do well, keep well and stay safe M x

[misty14 in reply to Maddymay65]

Thanks maddymay , glad you feel more positive about starting MMF. It's a big step. Fingers tightly crossed for you. Do keep us posted how you get on and keep well and safe yourself. Xx😊

[Frosty1960]

I had to come off it got stomach pains and caused outbreaks of shingles, wasn't helping anyway so stopped it.

[Maddymay65]

Hi Frosty1960

Sorry to hear that hope you found something else. Take care stay safe

M x

[miccika1]

Forgot to mention, i do take mmf after food. I remember reading it should be taken before food but it's much easier on the stomach after and my doc told me that's fine

[Bellissimo]

Hi there,I was on 2000mg a day and had a urine infection go into sepsis.... i survived but I was v ill. Now on 500mg a dayThey lower your immune system . I’ve lupus nephritis

And they do make the kidneys work better. 50 mg seems low. I’ve no other side effects. And feel ok now on them.