Mycophenolate mofetil

[maalidog]

Hi, my consultant has taken me off methotrexate yesterday to start me on mycophenolate mofetil, am anxious as another one of my consultants tells me this drug can be quite unkind. Has anybody had experience of it please. Appreciate any honest feedback about side effects.

[Barnclown]

I love myco...i was only on daily hydroxy + amitrip + 4 week 10mg pred tapers when i started myco in 2014... due to my history of mouth to a*s GI conditions etc i was prescribed Myco Cellcept which is meant to be easier on out GI tracts...and my bod needed 3 months to adjust + get up to my full therapeutic daily dose (1000mg) but the adjustment wasn’t any more unpleasant than with any of my other truly beneficial meds.

On the other hand, my best lupus friend, whose illness was similar to mine (sadly she passed away last year) develped persistent diarrhoea on myco cellcept...eventually our rheumy switched her to myco myfortic which has a different chemical action & suited her much better

We both felt immediate benefits from myco though, right from the first week. And i’m currently hoping to increase to 1500mg daily asap (am now having to be on the daily therapeutic pred dose of 10mg and would like to get this lower via increased myco)

Hope something in there helps 🍀🍀🍀🍀 Coco

[maalidog in reply to Barnclown]

THANKYOU so much.

[Barnclown in reply to maalidog]

You’re v welcome...i feel sure you’ll get replies rolling in soon...hope myco & you get along well

[maggielee]

I am on now 1000mg per day. My rheumy cut down to 500mg last yr. because my white blood count kept dropping....She refused to consider raising it again last June & my sjogren specialist said to increase back to 1000mg about a month ago & all fine & I have less fatigue which i struggle with everyday....So its helping me & wbcount is ok... I take it with food, as well as hydroxy....as I find empty stomach & these meds are not good....

Like BC I am on cellcept too. I have an appt soon with sjogren specialist it will be interesting to see what she says.... ML

[maalidog in reply to maggielee]

Thankyou.

[Barnclown in reply to maggielee]

Oh yes: you’ve reminded me maggie: i always take my myco cellcept with food too!

[Lily77]

I felt amazing on it for 10 days....but started throwing up on day 11. It was suggested that I wait 3 months and try it in solution instead of tablets and same thing happened again....10 days wonder drug....day 11 no deal. End result - to my great regret I was deemed unable to tolerate it and was taken off it by my doctors. I do hope that it will cause you no problems and you will benefit with all the upside. With very best regards, Lily

[maalidog in reply to Lily77]

Thankyou.

[Wendy39]

Hello. I’ve been on this drug since July 2016. I take 3g a day, which is the maximum dose I believe. So that’s 3 tablets in the morning and 3 in the evening. I have been very lucky and not noticed any side effects. It’s been a great lupus drug for me. Apparently it is very good if you have kidney involvement (I don’t). There’s loads of info online about it. You are right to ask though. It’s important that we are fully informed before making these decisions about our treatment plans. I hope it works for you. Wendy

[Barbs51]

Hi, I'm on mycro (cellcept) for the last 18 months, one and a half grams a day. I take it with food and apart from the first few weeks with tummy upset a bit I've been without any major side effects. Good luck 🌺

[panda2]

Hi, I think this is a terrific drug! I'm on the Cellcept version too. 2000g per day. 2 in the AM and 2 at night. I was started on the Myfenax version first, which did a number on me by week 5 at the max dose. Terribly sick, diahrrea, cramping and nausea every time. I was taken off that and put on Cellcept. Same Mycophenolate, just in a different formulation. I get the odd rumbling and stomach reaction now, but the Rheumatology pharmacist said it would likely pass, which for the most part it has over the last two months as I increased the dose to 2000 again.

I swear by this drug. It allows me to avoid steroids (at this point) and it has lessened many, many of my symptoms dramatically.

All the best with it. Looks like most of us think you will be pleasantly surprised. Provided you get the right one for you.

Panda x

[lupie46]

I've been the healthiest since diagnosis on Mycophenolate. No side effects either. Good luck. I changed from methotrexate to azathioprine and it really didn't agree with me. MMF brilliant!

[maalidog]

Thankyou so much everybody for your responses, very helpful. Xxxx