Mycophenolate (MMF) cellcept

[BlondeCircus]

Anyone on this meds please if so what dosage and how do you feel

Started it 4 weeks ago with steroids. I feel odd a few hours after taking it (like pressure in my head) but not sure if it’s that or the steroids. Sleep is very broken and sleeping less. You?

I should think it’s probably the steroids causing the sleep issues more than the Mycophenolate. They are a nightmare for sleep disturbance.

I was on Mycophenolate OP and didn’t have any issues apart from suffering more infections. Hope you’re doing ok on it?

I’ve been on it a while, I started on 500mg twice a day and have been up to 2.5g twice a day. They increased my dose gradually. I’m back down to 1g twice a day as my blood counts are a bit low.

I found when I first started taking it and when my dose increased I was a bit more tired than usual for a couple of weeks and felt a bit nauseous (I got Cyclizine tablets from my GP for the nausea which stopped it). Other than that I don’t have any side effects.

I’m on both at the moment too and it’s definitely the steroids that are making me feel awful, my sleep is all over the place and I feel like I’m constantly in fight or flight mode.

My sleep is terrible I’m sleeping part of the day and part of the night. I think it’s the steroids but the GP gave me a 3 month fit note to cover any days I feel rubbish (about a day a week and my employer is really helpful) but put the reason as the mycophenolate. I’m also pretty high at points! Then stressy. The symptoms of my condition are lessening (I have Myositis with interstitial lung disease) but am only on steroids 3 months and hoping I don’t relapse after. Ah well, all things to get used to.

Poor you. Yes, the ‘up / down’ is weird and not that predictable. Am sat up til 3am some nights. But wake up 4 hours later wide awake? Then soooo sleepy by 12. Im lucky my job is home working and flexible but there’s a lot of life stuff going on here too. To be fair im glad they diagnosed me so I’ll take it. My lungs are wrecked and they didnt know why, they blamed several things from covid to my imagination! CT and much more detailed blood tests that I had to research and push for, finally revealed rogue antibodies !

HedgehogB what dosage steriods are you on, I’ve been on pred for years and put up with the side effects 16 years continuos on steriods no break but within last 6 months I’ve been given budesonide highest dose I would say it would be the steriods doing it

I had a horrible time on mycophenolate. It really damaged my liver and I felt really unwell all the time, kind of like I had been poisoned. I also had horrible anxiety/depression.
I am not saying that to scare people but because the doctors kept denying it was the mycophenolate causing those things even though they are listed as potential side effects. But within weeks of stopping mycophenolate all those symptoms vanished

CassandraWebb what dose where you on love, my consultant is thinking of putting me up to 2,000 Mg today

I was on 2000.
I would still say go with your consultant's advice, but be aware of the possibility of side effects. And make sure you are having the regular blood tests (I was, and they showed my liver levels rising, so I don't know why the doctors insisted I keep taking it?). I expect I was just very unlucky as I know lots of people have found it has worked well for them

@HedgehogB that sounds familiar- do you have Dermatomyositis by any chance?

@BlondeCircus wow! I thought I was an old timer on the steroids at 3 years. How are you doing on the Mycophenolate? I was on 2000mg and apart from initial side effects, it did get better. The problem is and as you know, they always like you to stay on these drugs for months, no matter how awful you feel! I always think that they are like using a sledge hammer to crack a nut.

Openthisdoor well my bloods haven’t been in normal mode since 2019 my poor consultant throwing everything at me to get it down as obv wants me off yes I’m an old timer 67 years old, but to be honest was doing ok till I got vertigo for last 6 weeks I’m actually seeing my consultant this afternoon praying my latest tests have come down a bit

I'm on 1000 mgs a day. I was on 1500mgs but was just ill constantly with infections and viruses. Been a lot better on lower dose. Make sure you let your GP know you are immune suppressed so you can ring up for antibiotics easily and qualify for extra vaccines.

Yes it’s strange, I go to sleep fine but wake up after around four hours and that’s it, though it’s improving as my dose is lowering. It’s more that I’m always hungry now. I put over half a stone on when I first started taking them which was all fluid. My legs were like tree trunks. That’s all gone again and I’m back to my usual weight, they do strange things to us.

I’m on a ten week course started on 50mg a day for a week and drop by 5mg a week so took ten tablets a day for a week, then nine a day for a week. I drop to five tomorrow so half way there now.

It sounds good that they have got to the bottom of what’s wrong with you and I hope they help.

Mines given by consultant so he well knows I’m immunosupressed love I’ve had most of the immunosupressents, my consultant said he could put me on 2000mg I’m on 1500 at moment or could switch to tacrolimus which I really don’t want to take to be honest

My bloods have never been right while on them either more my iron levels than liver, though my iron was low before I started on them. It dropped to 88 when I started on the steroids and MMF. It’s back up to 100 now. I was referred to haematology who I saw yesterday who have done other blood tests to see if there is anything else going on to cause it.

@BlondeCircus Fingers crossed for this afternoon and I dont blame you with the Tacrolimus, another drug that seems to come with a whole host of nasty risks and side effects too.

To be honest my whole sleep cycle has changed since being on the steroids - my day starts at 5am now. When I was on the really high doses and for months at a time, the lack of sleep was horrendous. I use to have my Kindle by my bed and just read it throughout the night, for when those wide awake periods hit, like someone had just turned the light on and my body was raring to go! I have never read so many books. Sympathies to all of you that are in the thick of it now.

Yourinmyspot. Can I ask if you don’t mind what illness you are being treated for. I would private message you but I don’t know what I press to do it lol

Openthisdoor when I was on high dose pred I had nightmares( never ever had them before and every night for ten days I was being either stabbed chased or hit over the head, so weird! I dreaded going to bed but my consultant put me on budesonide miles better than pred no sick feeling etc

Back home from consultant I’m over the moon my Alt has gone from 56 to 35 normal is 0to 32.I need to celebrate I see him in 4 weeks another blood test in 2 weeks and no increase in meds yay!

Brilliant news! 😊

It’s a skin condition I was originally diagnosed with subcorneal pustular dermatosis but had another biopsy in January and they aren’t sure now. I get blisters all over my hands, arms and chest.

Yourinmyspot is it autoimmune I presume it is

My child is on MMF post transplant.
500mg in a morning and 250mg at night taken 12 hours apart.
As far as we know they don’t have any problems on it ( but they have been on it for a lot of years now and probably can’t remember what it’s like to not take it) and have no issues with low immunity.
They started on a very low dose and built up to this one. They were on tacrolimus for a long time too but it caused some kidney damage so switched to sirolimus which is working much better.

They think so, I’m just waiting to be seen by another dermatologist who will hopefully know exactly what it is.