Mycophenolate Mofetil: Evening all... - Lung Conditions C...

Lung Conditions Community Forum

55,064 members65,853 posts

Mycophenolate Mofetil

Evine profile image
12 Replies

Evening all! Just a quick question for those of you who take mycophenolate Mofetil (immunosuppressant). I finally got the go ahead to start taking the medication after suffering from infection after infection. So... I wondered how long it took for you guys to feel the effects (good and bad!) 

Thanks in advance and hope you're all doing well xxx

Written by
Evine profile image
Evine
To view profiles and participate in discussions please or .
Read more about...
12 Replies
Bronagh2015 profile image
Bronagh2015

Hi Evine, I have asthma which has being flaring very badly over the last 6 months but is at last beginning to settle again! However I have been on Myco 750mg twice a day for nearly 2 years now for Lupus which I have for 20 years now.  At the beginning it made me feel sicky and headachey but I found if I ate little and often it helped this.  It's also important to have your bloods checked frequently and keep away from anyone who has chicken pox, shingles etc as they really lower your immune system making you vulnerable to all these infections.  Try to stick with them even if you feel miserable at the beginning it does get better and they really helped my Lupus so hopefully they'll help your breathing problems.  Best of luck, Bronagh

Evine profile image
Evine in reply to Bronagh2015

Thanks for your reply! Can I ask how long it took before you started to feel better? X

Bronagh2015 profile image
Bronagh2015 in reply to Evine

I felt the effects after about 6 weeks and I've not had a major flare since starting them whereas before this I was flaring about every 6 months and each flare worse than the last one and more difficult to bring under control.  It's also meant I've been able to drastically reduce my steroids at long last! 😊 Bronagh

Evine profile image
Evine in reply to Bronagh2015

Ah that's great news! Thank you so much for all your help xx

Bronagh2015 profile image
Bronagh2015 in reply to Evine

Your welcome Evine, I really hope it works out for you, please keep us posted 😊 X

Mendy profile image
Mendy

Hi Evine, cant say anything about good effect,good effect maybe ll be seen on ctscans and other tests. This drug ll not improve the lung function, it should just stop the progressing of disease. Bad effects: yes, lots of infections one after the other and being sensitive and allergic to perfumes, air freshners and most of the smells. 

Evine profile image
Evine in reply to Mendy

I hope it passes for you! Thanks for your feedback xx

clare86 profile image
clare86

I have been taking it 7 weeks and have no signs of improving my condition yet

Evine profile image
Evine in reply to clare86

Thanks Clare - hopefully we'll see some effects soon for us both! X

clare86 profile image
clare86 in reply to Evine

Hopefully, fingers crossed x

dall05 profile image
dall05

Hi Evine,

I've been on Mycophenolate for around 3 years on a dose of 2 grams a day. 4 times 500mg.

I never really noticed a terrific difference in the way I felt but when my consultant showed me the graph of my inflammatory markers they had dropped dramatically and flat lined from the time I started them.

I was put on Myco because my immune system was attacking my lungs causing Pulmonary Fibrosis. I have monthly blood tests to check for liver problems that can be a side effect of Mycophenolate but they've always come back ok and I haven't noticed any other side effects.

Evine profile image
Evine in reply to dall05

Thanks so much for getting back to me. I have been told this is a bit of a wonder drug so I'm hopeful although I'm wary of my next blood test as my chest is feeling very tight and it's more than likely I've caught the cold my kids have had. Fingers crossed. X

You may also like...

Mycophenolate instead of Perfinedine or Nintenanib?

improvement in their condition with Mycophenolate? Thank you in advance for taking the time to read...

Mycophenolate & nausea

Hi i take Mycophenolate along with other things for hypersensitivity pneumonitis they increased my...

Had to cancel my Lung function tests

say I'm gutted is an understatement. After waiting sooo long for some answers I've had to cancel my

Steroids for COPD flare up

had for years. I took the first dose with no problems. Today about an hour after taking the I felt...

Coughing and breathless in a morning

problems then. Hope your all enjoying the weather the best you all can. Take care. Brian