Discussions
Discussions
NTM/MAC in Kidney Transplant patient
Hello, my mom (71yrs) had a kidney transplant 7 years ago. She has recently been diagnosed with NTM and MAC. She has been doing breathing treatments for the last 3 months but the MAC is spreading and they want to start her on medications. Since she is on immunosuppressing drugs, she can't be on "normal" drugs to treat NTM/NAC. They want her to be in a trial for Clofazimine. Has anyone been on this drug? Any information you can pass on to me? Also, she is seeing a pulmonologist at Denver Jewish Hospital but is having trouble finding a Kidney transplant doctor that has treated patients with NTM/MAC. Does anyone have any kidney doctor recommendations? Thanks!
Replies
Hi @JJ77. I am so sorry that your mom has been diagnosed with NTM on top of her health history.
I hope that someone in our community can offer some advice on using Clofazimine.
I found a couple of studies using Clofazimine that might help with your research.
https://pubmed.ncbi.nlm.nih.gov/31138497/
and
https://pubmed.ncbi.nlm.nih.gov/28483608/
Keep us posted on how her visit goes with Denver Jewish!
Hi @JJ77. I am so sorry that your mom has been diagnosed with NTM on top of her health history.
I hope that someone in our community can offer some advice on using Clofazimine.
I found a couple of studies using Clofazimine that might help with your research.
https://pubmed.ncbi.nlm.nih.gov/31138497/
and
https://pubmed.ncbi.nlm.nih.gov/28483608/
Keep us posted on how her visit goes with Denver Jewish!
JJ77,
Hello! I reached out to a few friends to see if they know any transplant specialist who has experience with NTM. No news as of yet... will keep you posted if I hear of a referral
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