Experiences with

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 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

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!

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

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 .

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 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.

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.

Hi, SSc/overlap DM for 20 years (prednisolone, mycophenolate etc) Recent dx of Carotid Artery Disease (thankfully before any TIA or stroke) My Q is - I'm in doctor led clinic on Friday & have been told that it is unrelated to SSc & that it's an age/lifestyle issue( I'm 62 & don't agree with the

Over the last few months my consultant has tried me on; Azathioprine, Mycophenolate Mofetil, Leflunomide none of which agreed with me side effects; nausea, headaches, dizziness and generally feeling unwell at my last appointment I asked if my consultant could make a case for me which she replied NO if

He appeared satisfied that I was on long term 5.5 Prednisolone (I had previously run into trouble at 5mg) but his follow up letter indicated a plan to offer me Mycophenolate Mofetil as a DMARD to get me off steroids. Has anyone had experience of this treatment ?

I am also on Mycophenolate . Has anyone been able to stop prednisone while on belatcept?

I am still on 3mg budesonide, mycophenolate and urso and numerous other tablets, unfortunately I am getting a lot of IBS does anyone else suffer with this numerous times and do they have any self help tips? Thanks

I am intolerant of the drugs azathioprine and mycophenolate, as I am intolerant of drugs containing thiopurines. I am 72 and have been told I am too old for tacrolimus. I am currently on prednisone. I want to come of these as I feel really unwell with various symptoms.

Hi I posted last week about decision to stop Mycophenolate after 12 months and switch to Azathioprine, unfortunately blood tests found I'm not suitable so now the plan is to start Methotrexate next month. Just wondering if anyone had any tips to manage side effects?