Hi everyone
Im in a bad flare this past 12 months and my Rheummy has started me MMF to try to control things. Has anyone any experiences of this drug, all good I hope! Does it cause weight gain - as I already need to lose weight 🙈 just hoping it works well for me as I cant cope with this flare any longer 😊
I've been taking mmf for 18 months now.i can comment on weight gain as I also take steroids.i had side effects for the first few weeks and my hair went curly but nothing since.it takes about 8 weeks to start to work and its regular bloods ...im on monthly bloods.hope it helps you but be patient it takes time xx
Hi spanielmadlady Glad to hear its working well for you 😌 yes Rheummy said I might have some not so nice side effects such as cramps/diarrhoea but hoping I tolerate it okay😖that’s hillarious your hair went curly...I wouldnt mind that side effect 😃
My hair is poker straight and I usually have it cut short but as it grew during lockdown 1 it went curly.my hairdresser has cut my hair for over 20 years so she seen it all ways.worst side effect for me was violent headaches and nausea every day for 3 weeks.my daughter was due to give birth so I asked to delay increase as I couldnt drive with such bad headaches. When I did increase I got all the side effects back again but only for a few days .I take my mmf with my breakfast.you can take it with or without food but they say once you decide which to do stick to it .at first every scratch or cut regardless of size went septic so I needed plasters and antiseptic to hand.now I have no such issues.aside from covid avoid anyone with a cold ,flu or stomach bug .good luck xxx
Great advice spanielmadlady, thanks so much, great to hear others experience xx
So strange, I've been on it for a few yrs and my straight hair has gone curly in sections too.
Odd isnt it.its because the drug doesnt distinguish between cells so affects them all..my hair is straight in some places too mainly on one side 🤷♀️ x
I had put it down to rituximab and belimumab as I had those infusions, have you had those?
I only have maybe 4 ringlets worth of curls, so it's not the head of curls I craved as I kid, it's just made my hair frizzy when I brush it.
X
No ive never had those just azathioprine and mmf. They call them chemo curls.now my hair is abit longer due to lockdown I have chemo kinks.....thank god for straighteners lol xxx
Yes definitely a god send! Though during lockdown I have embraced my birds nest, 😆xx
I usually have a pixie cut and now i have a jaw length bob ...thankfully having to wear a hat has hidden alot of bad hair days lol 😁 xx
Lol....thats so funny sarahalice, such a bizarre thing to happen! Luckily I dont mind a few wee curls....if I have any hair left, its falling out so fast with this flare 🙈 x
Oh no. It horrible isn't it. I really suffered from hair loss, its heartbreaking.
I have tried everything and spent hundreds trying to slow the hair loss.
The best things I've tried are Watermans shampoo and conditioner, available from Boots and Amazon. (Very good value)
I only wash my hair once or twice a week. Every other day I use Grow Gorgeous serum.
The day before I wash my hair, I rub a handmade mixer of castor oil, sweet almond oil, rosemary oil and peppermint oil into my scalp and leave it on over night. Its messy!
I use the brand Naissance.
This has made a massive difference, and my hair is so much better.
Hope this helps x
I’ve actually lost significant amounts of weight both times I’ve been on MMF.
The first time it was from going on the AIP diet at same time and I felt awful on this diet but better once I stopped.
Second time now I’m back on MMF and I’ve lost a lot of weight again - this time unintentionally. But it turns out I have severe Gastroparesis (probably for years - hence weight gain) so likely totally unrelated to MMF.
However I did teeter on serious obesity in the years between taking it - so I reckon this weight gain/ obesity was due in large part to uncontrolled inflammation.
Funny you mention the uncontrolled inflammation causing weight gain because I was recently on prednisolone and actually lost weight and I was out of horrendous pain. But defo I think I was slimmer due to the decreased inflammation! But since I stopped steroids Im puffy and round again, but Im in massive flare so fingers crossed I will shrink a bit when the new drug kicks in 😉 x
This has been the best drug for me. I feel better on MMF than I have on any of the others including steroids. Take it on an empty stomach as per manufacturers' recommendations. Your body will soon get used to it, though there may be some side effects at first. Good luck - I hope it works for you.
Ahh fab! I hope it works as well for me, I was feeling a little nervous starting this but just reading your responses Im looking forward to feeling alot better....fingers crossed it does its job 😉 x
I'm with WinterSwimmer. It's a great drug. As a steroid sparing drug I've found it brilliant and more importantly- really effective !
I had to change from micophenolate mofetil to micophenolate Sodium ( same drug - just metabolized differently ) - due to gut problems ( have a bit of a slow gut ) and it revs me up a little - but that can be a bonus when youre wilting toward the end of the day. Bit like a strange coffee.
I think with me it might suppress the appetite a bit - but in a good way. I'm on a fair load of pred and for me it might be counterbalancing the food rampages. ( just my theory )
It's good stuff.
Its great to hear all the positive experiences 💁♀️ thats why i love this forum, the advice and support from everyone is invaluable, thanks so much everyone 💜💕💜
Hi Shann07,
Sorry to hear you are flaring. I know people that adhere to Mycophenolate. Unfortunately, my experience was not good. I was out on one 500mg pill each day for a week in April. Increasing to two 500mg week two and three 500mg. After taking the first dose of two pills I had an allergic reaction. Dialled 111 and paramedics advised piriton and spoke to duty doc who told me to stop taking them. They actually made me feel worse lots more pain and muscle aches. The pain was so bad I did nt want to eat orove off the sofa. PLEASE remember this is MY experience and yours may be fine. My best advise to you is if you feel the pain or muscles becomes worse act immediately and contact your rheumatology team. I wish I had rung them after two days. I was trying to persevere to see if they worked and that was not a good idea in retrospect.
I wish you all the best and let me.know how you get on.
Good luck!
Yes it was very worrying. Thankyou for your concern.😘 I hope it helps. I didn't want my post to scare you. I had an allergic reaction to the Astra Zeneca jab and was admitted to hospital for three days. Just goes to show everyone is different. Many people do very well on mycophenolate so I hope that will apply to you!🤞 Let me know how you get on.💕
Intolerance of heat, MMF and Steroids
MMF or Azthoprine?
Mycophenolate 
Mycophenolate
