British Lung Foundation
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Mycophenolate

Hi everybody

I may be prescribed mycophenolate soon. The side effects sound awful. I'd like to know the experience you've had with it. The respiratory doctor seemed to think I should be getting some treatment for my lungs. Personally, I feel that with RA related pulmonary fibrosis and severe pulmonary hypertension, there isn't much point at this stage.

I'd also like to know how I'm going to die with PH. Will there be any warning, or am I going to just drop dead? I'm sorry to seem morbid but I would just like to know.

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Dear Phyll

I cannot comment on your med sorry I don’t know about it.

I have LAM, or lymphangioleiomyomatosis 😉, a rare cystic pulmonary disease.

I take what they give me and look at the side effects afterwards if something comes up.

Mind you I always ask if the benefits outweigh the risks.

It is a genetic orphan disease, if I had believed in what I read at the time I wouldn’t be alive and kicking today.

And I think I have some good years in front of me.😊

The last consultant told me you won’t die of LAM, you could die of respiratory failure or a heart attack. And I said thanks for sharing that with me. 😃

Honestly..

So watching sitcoms or whatever you enjoy

Listening to music

Reading

Meditation

Simple exercise

Enjoying fresh air if you can, looking at birds and trees and children playing and laughing

Helping others

That’s what keeps me going..

Take good care of yourself x

Fran

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Thank you Happylondon. I know you're right about enjoying nature.

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You are welcome Phyll 😊

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Yes, nature is a great comfort, Phyll. Take care 🌻🌸🌿

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And you do these things very well, Fran 🧚🏻‍♀️ Speak soon xx

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Hi Phyll

I've been on Mycophenolate for 5 years. I'm very sensitive to drugs and their side effects but Mycophenolate has caused no problems at all so please don't worry about it. Most people tolerste it extremely well.

Take good care xxx

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I have sarcoid pulmonary fibrosis. I took methotrexate ( another immune suppressant) for about 6 weeks and had a lot of the bad side effects . They changed me to mycophenalate which I’ve taken for about 8 months. I get hardly any side effects. The only thing I notice is that my motions are looser but no problem. It has probably increased my lung function from 50% to 60% which pleases the consultant. It doesn’t seem to help with my breathlessness. We all react differently so you can’t predict how it will affect you. It does seem to mean it’s more difficult for my body to fight chest infections but the doctor gives me emergency supplies of antibiotics to take . I’ve had 2 chest infections in the last 6 months which isn’t too bad as it’s been a bad winter for chest infections. I am pleased that the mycophenalate means I can reduce the steroids as it reduces inflammation. I was on 10mg a day but over 5 months I have reduced it to 1.5mg a day. The side effects of steroids frighten me far more than those of Mycophenalate. Good luck with your decision. It’s not easy is it.. take care - Joanna

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Fresh air and walking dose help ,I know nothing of the tablet your taking.

Take care

Susan 🙏

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my wife has been on it for 2 years and saved her life she still has ILD interstitial lung disease but not getting worst so far she takes a sleeping pill or half of it most of the time and thats it for side affect for her anyway it takes 3 months to start really kick in and I hope it helps you as much it did her wishing you the best don't be scared take care

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Thank you for that. If only I had 2 years. I'm afraid that the Pulmonary Hypertension will get me long before that.

Thank you everyone who has replied to my post. Mycophenolate sounds like a good drug, but maybe too little, too late.

Anyway I really appreciate the kindness and encouragement from people who post on this site. I'm constantly amazed at how cheerful and positive people are even whe they've got lupus, which sounds truly awful.

Take care of yourselves and soldier on.

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I have tried mycophen late 3 times now. I always get thrush. I am going to try it again because my breathing is getting worse. I have bronchiectasis and interstial lung disease and COPD. I am 60. Take taladafil for pulmonary hypertension

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