Your experiences of Mycophenolate

[GingerCatJayne]

Are you taking this drug? I have high hopes when I start it within the next month for my interstitial lung disease. I also hope it will help improve my crippling osteoarthritis of my spine.

I would love to hear your experiences, good or bad.

Thank you.

Jayne

[AngieB72]

Hi

They tried me on it but I couldn’t tolerate it and my breathing deteriorated. Stopped it after 6 weeks. My breathing returned to how it was prior to the medication.

I hope it is more successful for you, I have heard it has helped a lot of people just not me!

[Wendy_A]

Hiya, I started this 5 weeks ago and so far so good. I’ve defo noticed an improvement only slightly but an improvement. I’m currently taking 500mg twice a day but this has got to be increased to 1gram twice a day. At the same time as starting this tablet I also changed another tablet I swapped clarithromycin for azithromycin so I can’t say exactly which one is responsible for the improvement. I also have interstitial lung disease but this name covers quite a few lung diseases. The full name for mine is idiopathic interstitial pnuemonitis, likely cryptogenic organising pneumonia with bronchitis, type 1 respiratory failure requiring oxygen 24/7 and I now have steroid induced type 2 diabetes. I’m 47 and have had the lung problem for nearly 6 years and diabetes for nearly 3 years, but I’m doing well lol still laughing and joking and keeping positive. Good luck with your new medication and fingers crossed you feel a positive improvement. X

[GingerCatJayne in reply to Wendy_A]

Thank you, I have diabetes as well. Good luck xx

[Titchykath]

I have been on it for 10 months, was on 1000 twice a day , but had to reduce it to 750 twice a day , my white blood count was too low. I have a auto immune disease called anthysynthas syndrome which causes scarring of the lungs. I am also on o2 when walking, 2ltrs.

[Linnie13]

I've been on it since march ,not noticed if its better or not ,as my breathing isn't that bad with me my sats drop very quickly when mobile so need oxygen when mobile I have hypersensitivity pnuemotitious, which scarring in lungs ,also on a steroid

[gilles]

my wife is on it and it saved her life and she also has osteo in her spine but it doesnt fix that but it stop her lungs from getting worse good luck Gilles