mycophenolate

[Numptybrain]

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 (sorry forgot name) . I have had numerous bouts of pneumonia and sepsis, very lucky to still be here so my family are obviously concerned of the risk to further infection. Can anyone advise, have they had more infections on this etc. Any advice please

Take care

Wendy xx

[Haggisgirl]

I've been on mycophenolate for 4 years ,I would say it's been good for me ,I have pulmonary fibrosis, I haven't had any infections since ,I count myself lucky !! Along with steroids and other meds it's kept under control with just a bit of progression .. keep well

[Numptybrain in reply to Haggisgirl]

Thank you for your input, it’s a worry especially when you are prone to sepsis but respiratory say it’s best way forward to stop further damage to lungs.

Take care

Wendy xx

[Alberta56]

🤞🏼🤞🏼🤞🏼

[Rossy100]

hi, I’ve been taking mycophenolate for 2 years and my lung function tests have remained the same I’ve been able to reduce steroids to 10 mg and hope to reduce further when I next see consultant in October. I have hypersensitivity pneumonitus and am 68!! Good luck and keep well

Gaye x

[Numptybrain in reply to Rossy100]

Thanks Rossy, it’s making me feel more at ease now reading your reply’s. I really appreciate this as although I know it’s the only choice I have to have any kind of decent life it’s always scary when you read about them.

Take care and thank you everyone.

Wendy xx

[MoosterMoo]

Hi Wendy, I've only been on mycophenolate for 6 months not I've managed to reduce my steroids to 5 mg so far. One of my children had that awful flu virus back in January and another had covid in March. I was fortunate and dint catch either x

[Numptybrain in reply to MoosterMoo]

Wow that’s really good and certainly makes me more at ease. Thank you so much for this.

Take care xx