Experiences with

Mycophenolate

When prescribing mycophenolate rheumatology said she needed to contact them immediately if ever unwell on it. Unsurprisingly she can only get through to a receptionist and no one will speak to her until next week! She has amoxcyline but it says online not to take with the mycophenolate.

Hi everyone, I wonder if anyone else has been on mycophenolate for a few months, but managed to change to something else with less side effects?

Anyone on this and having constant bloating, wind etc . I take Lansoprasole which has just been increased to 60mg and want to carry on with this medication but it’s killing my stomach. I don’t have a gallbladder so I have stomach issues anyway including mild CKD. Take care Wendy xx

hello I have just joined this network and am looking for any information on the drug mycophenolate. I have systemic scleroderma which is affecting my lungs and my consultants are considering putting me on mycophenolate as my condition has worsened.

What should I expect with Mycophenolate? And Is it a routinely given one? I was expecting Aza but this was the only option.

I have eyes feeling heavy and sore but not dry. I was on 400 mgs of Hydroxychloroquine ina divested BD but trainee GP in April suggested my Rheumatologist half dose which he did! This made a great improvement overall but wish I could stop one of other of these meds as I feel they make me tired after

Is anyone on here on Mycophenolate , this is the new meds they want to start me on to try and get things under control, awaiting my test results from bloods to see if my body is suitable?

I have scleroderma for past 12 + years and been on mycophenolate for 10 years for lung fibrosis I have now been diagnosed with PMR and in chronic pain doctors not sure about prescribing steroids which would get rid of pain because I’m on mycophenolate.

Hi everyone. I’m about to start this meditation I’m currently on 23mg steroids plus loads other meds. I have long standing pleural/pericardial effusion’s caused by Serositis. My daughter asked for advice from rheumatologist yesterday but just got a leaflet shoved at her. I am on Lowe dose antibiotics

I have been diagnosed with Diffuse Scleroderma this year and have been in Mycophenolate since July. I know that it has bad effects on pregnancy so rheumatologist said to be careful. My partner and I are planning to have kids. Did anyone here get pregnant while having this illness?

It was then decided to put me on mycophenolate which to be fair has helped but my hair is falling out . To the point my 1 year old Grandaughter was sat on my lap and as baby's do she grabbed my hair and ended up with some of my hair in her hand .

Did you feel worse when coming off mycophenolate before the azathropine kicks in? My Dr said next step was biologics but as I’ve only tried mycophenolate I can’t be prescribed them till I try azathropine. So I’m really hoping it helps!

diagnosed December 24 and started both Hydroxychloquine and Mycophenolate then, been on steroids since Oct 24. One of the worst symptom he has is very painful fingertips, he has to wear gloves all the time as they are so painful and this impacts on his daily life immensely.

I'm on Mycophenolate but think I'm becoming less tolerant to it. I feel sedated weak and nauseous. Has anyone else had this?

My ANCA levels are rising again having also been on mycophenolate and others but had to stop because of side effects. My question is has anyone gone into remission without ever having Rituximab? Thanks for any replies 😊

I have recently switched medications from Azathioprine to Mycophenolate Mofetil, which I take along side colchicine, and have now slowly weaned myself off of prednisolone.

I was diagnosed just over a year ago but was suffering for 6 months prior to diagnosis, My symptoms are being treated with Mycophenolate and steroids which has brought about some improvement but my stamina and strength as well as cognitive function are severely impaired.

I am on 5mg/daily prednisone after my kidney transplant 4 years ago, in addition to tacrolimus and mycophenolate. The prednisone causes my skin to thin so much that the slightest touch creates a nasty purple bruise.

Along side he said I should start tab mycophenolate mofetil 500mg ( immuno supppresant drug). Has anyone got experience of this drug? While I have stopped HCQS , my face rashes have increased and I am yet to start the above drug .. any advice / experience will help. Many thanks

The transplant team reduced my Mycophenolate in half and the results dipped a little and then the next week back up. They warned me it might go higher but didn't give me an indication of how long it will take to get it back down to acceptable levels.