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Mycophenalate and Bronchiectasis

PostPosted: Thu Oct 27, 2016 8:26 am
by lashy
Hi All,
Hope all as well as can be with you all.
Chris, now 10 years post transplant and doing well kidney-wise, but he was diagnosed a couple of years ago with Bronchiectasis (spelling?).
His chest has been very bad in recent weeks, antibiotic after antibiotic...but not shifting his chest infection. He's short of breath and struggles to catch his breath after a coughing fit. I did a bit of research and found this article from 2015, commenting on a link between mycophenalate and bronchiectasis. Have any of you been diagnosed with any lung disease since taking mycophenalate? If so, might be worth reading this article and chatting to your doctor/nurse about your medication.
We are waiting to hear back from Chris' doctor today, as a change of immunos are now being discussed.

https://www.gov.uk/drug-safety-update/m ... chiectasis

Keep well,
Emma x

Re: Mycophenalate and Bronchiectasis

PostPosted: Tue Nov 01, 2016 6:35 pm
by lizzyie
Thanks for posting the information Emma.....I have suffered the same way but through Myfortic which I'm sure is the same drug
.
I caught pneumonia and after was very ill with chest problems for a year or so, I thought I would never get better! I kept getting chest infections and was admitted to hospital twice, had at least 4 Xrays and one uncomfortable scan involving a dye. They told me after a year of tests and antibiotics that I had Bronchiectasis, I felt really ill and tired through the coughing and lack of breath.

After 14 months of thinking I would never get better and many courses of antibiotics we had a new consultant arrive at our clinic.....he took one look at me and said we could try halving my Myfortic from 720 twice per day to 360 ...... within a couple of weeks I could climb the stairs without being out of breath!! my coughing was less productive (I still cough every morning) and I began to feel better.

thanks again for posting the link...
I hope Chris gets better and things sorted out
Liz

Re: Mycophenalate and Bronchiectasis

PostPosted: Thu Nov 03, 2016 1:59 am
by sporti
Hi

Very interesting. Thanks for posting

Re: Mycophenalate and Bronchiectasis

PostPosted: Wed Nov 23, 2016 10:35 pm
by lashy
Update:
Consultant has agreed the cause of the severe chest infection/wide spread effects of bronchiectasis is likely due to Mycophenalate. Waiting for confirmation from chest doctor to confirm no other factors.
Will wait and see what happens next.....
Keep well all x