1. < MAC & Bronchiectasis

MAI and Sarcoidosis

Posted by criggyf1 @criggyf1, Mar 20, 2023

Does anyone here have any experience with having BOTH? I have been diagnosed with having BOTH of these at the same time now.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

irene5 Irene Estes | @irene5 | Mar 21, 2023

Not both - but I have MAC and my husband has sarcoid!! I know of one other couple like that. Crazy right! ( irene5)

REPLY
jau1 | @jau1 | Mar 21, 2023

Yes, I am 71 yr old female. Have had sarcoidosis for over 15 yrs and take 2.5mg of prednisone every day. I was diagnosed with MAC 18 monhs ago . Taking big 3 for that. Seems I live well with sarcoidosis, but even that low dose of prednisone has had side effects. I rarely think about my sarcoidosis . Hope that helps. Losing weight from clofazamine though!

REPLY
1 reply
criggyf1 | @criggyf1 | Mar 22, 2023

It stinks! Thank you for replying...

REPLY
criggyf1 | @criggyf1 | Mar 22, 2023
In reply to @jau1 "Yes, I am 71 yr old female. Have had sarcoidosis for over 15 yrs and take..." + (show)
@jau1

Yes, I am 71 yr old female. Have had sarcoidosis for over 15 yrs and take 2.5mg of prednisone every day. I was diagnosed with MAC 18 monhs ago . Taking big 3 for that. Seems I live well with sarcoidosis, but even that low dose of prednisone has had side effects. I rarely think about my sarcoidosis . Hope that helps. Losing weight from clofazamine though!

Jump to this post

I am a 54 year old female. This helps a lot and thank you for replying. What do you take the Clofazamine for? I weigh @ 115 and they initially put me on 60mg prednisone a day. That caused my hair to fall out and all sorts of other bad stuff. I am not on 10mg of Methotrexate for the Sarcoid but so far it hasn't improved. Thank you! Warmly, Christy

REPLY
shar1120 | @shar1120 | May 11, 2023

I have these too
Does an infectious Dr treat this or Pulmonologist ?

REPLY
Please sign in or register to post a reply.