Mycophenolate effects

[Corcaigh]

Hi,

I have posted before last year. I live in Ireland but this site is excellent. I was diagnosed with Wegeners/GPA exactly ten years ago - very severe in sinuses and lungs, induced for 18 days. Negligible renal effect but flared in my kidneys in spring last year i.e. 2019. My renal/vasculitis consultant stopped my six monthly rituximab in the summer due to covid - rational being that if contracted covid, unable to turn off compared to daily meds. First tried Imuran, lasted 2 weeks before having a reaction. Now on Mycolat since September. Have had soreness between shoulder blades but main worry is weight loss. Have lost 5/6 kgs. since mid July - from 70kgs to 65kgs. First 2 were during Imuran period. Have been with respiratory consultant this week and chest x-ray clear. I'm wondering if anyone has this issue with mycophenolate. I see online that it is a 'common' side effect. Thanks in advance for any replies

[ludo]

I was ok on Mychophenolate fortunately and it brought me into remission.

Perhaps your GPA isn't controlled yet.

Are you on the highest dose and also on prednisolone?

[Corcaigh in reply to ludo]

Thanks ludo for your reply. I'm in remission also. I'm 5mgs pred daily. Increases if I get a flare up but on 5mg daily for the last 10 years. Not on the highest dose as fas as I know - 2 X 500 daily

[Chris-Bromsgrove in reply to Corcaigh]

The usual maintenance dose is twice what you are taking but I guess your consultant is being cautious if there is still Rituximab in your system

[Corcaigh in reply to Chris-Bromsgrove]

Thanks again Chris for coming back. He did say to me that it was a low dose. I was essentially concerned about weight loss because it can be a red flag for other issues. I also had soreness between shoulder blades. I was with my respiratory consultant this week and was relieved with my chest x-ray being clear. My renal consultant has a special interest in vasculitis so that helps. Reading what some on here have had to endure I feel I have been reasonably 'lucky' so far considering how my initial illness was so severe. Last year my GP picked it up really early from my kidney markers - creatinine, haemoglobin and then urine sample. You're more familiar with these than me. Not too sure but I think you may have indicated that you are a GP. Sorry if I've got that wrong

[Chris-Bromsgrove in reply to Corcaigh]

No, I'm a Mechanical Engineer (retired) but a do know a fair bit about renal involvement having gone through it. Other than joints that was the only organ really affected thankfully

[Corcaigh in reply to Chris-Bromsgrove]

Sorry Chris. Obviously got the wrong guy

[Chris-Bromsgrove]

Hi Corcaigh, active vasculitis can result in weight loss but it is more likely the Mycophenolate. I've been taking it for 8 years now for MPA and it has maintained my remission throughout that period. I have also maintained a healthy weight but I do get one of the other side effects - loose stools. That side effect possibly compensates to some extent for over eating to keep my weight stable. I think the main thing is to see whether your weight stabilises at a healthy level. Chris

[Corcaigh in reply to Chris-Bromsgrove]

Thanks for your reply Chris. I was thinking it may be the mycophenolate.

[kitkatmum]

Hi, don't know if I can help but currently in Rituximab, azathioprine, prednisolone and antibiotics. Haven't had side effects of azathioprine but have been told my Rituximab must keep going 6 monthly regardless of coved as I'm still shielding/isolating. I was diagnosed almost a year ago so still new to all this.

[Corcaigh in reply to kitkatmum]

Thanks kitkatmum for your reply. I'm self isolating also so I will bring this up with my renal consultant in January. Weight loss was my concern but I think it may have stabilised, hopefully