sticking with Mycophenolate

[Findingthejoy]

Hi lovely people - newbie here

Wanting some info on pushing through side effects. A bit fed up! Been on Mycophenolate for about two months now and am on only half the dose I’m supposed to be on and struggling with chills and flu like symptoms. Particularly in the afternoon?! Have lupus and low platelets (ITP) and they ( along with hydroxychloroquine and steroids) do seem to be slowly making a difference to my platelet levels but I cant seem to move up a dose and maintain some quality of life. Would love to hear other peoples experiences? Many thanks

[WinterSwimmer]

I have taken it for many years, in doses of up to 2grammes daily. For me it has been by far the best lupus (and nephritis) medication and worked well until covid (since when it is a whole other story).

I often tout the importance of taking it away from food, which used to be one of the how-to-take- this medicine instructions in the leaflet but no longer seems to be. At least an hour either way and preferably two. I don't know if it will help your side effects, but you can only try.

[Mrsdoozer]

Hi ,I have been on Mycophenolate since the middle of last year ,having been on Azathiropine for 4 years before. The Azathiropine kept making me neutropenic so I was moved to Mycophenlate. My neutrophils returned to a normal until recently . They are back to being erratic ,I think it's just me and how my body runs. I have felt better on it ,but it was a month to build it up to my full dose . As for the cold flu & feeling ,I have exactly the same symptoms as you . Usually late afternoon evening . I feel and sound like I have a cold but nothing comes to fruition. Maybe it's a Sjgreogns/Lupus thing as I have heard other people say the same thing happens to them.

I hope you soon feel better .

Best Wishes

Angela xx

[Findingthejoy in reply to Mrsdoozer]

Hello Angela. That’s interesting to know your symptoms also get worse in the late afternoon - thank you for taking the time to reply x

[Spanielmadlady]

Hi. I've been on mmf for over 5 yrs now. At first the side effects were hard going and when the dose was increased I struggled. I found out that instead of taking all 3 tablets together I faired better if I spaced them out over the day. ( with approval of my rheumy) it has worked for me but if you really feel you can't tolerate it say so something else may suit you better . Kind regards SML X

[RosieA in reply to Spanielmadlady]

I had to stop my Azathioprine and am now on MMF. Just about to up the dose from 500mg to 1000mg and then wait to see if I need more. Good to know that I can separate the dose if needed. So far so good!! xx

[Spanielmadlady in reply to RosieA]

I've got everything crossed it works for you x

[Autolupus]

I was on methotrexate but became neutropenic and really struggled with nausea, fatigue and just feeling rubbish. My liver bloods were rising every week. I was switched to mycophenalate 2 years ago, 2g a day and find it much more tolerable. Maybe mtx isn't for you. Hope you find the right med/dose.

[Findingthejoy in reply to Autolupus]

Thank you for taking the time to reply Autolupus. I’m aiming for 2g a day and think finding the right dose will be the answer 🙂

[nottypical]

Why steroids and mycophenolate?

I was so glad to come off prednisolone & have been on1g mycophenolate (1/2 morning & evening) for years with no problems

[Findingthejoy in reply to nottypical]

I needed the steroids for ITP but am hoping to come off them soon now. This week I managed to get up to 2g of mycophenolate and its been really great having peoples comments here.