@sueinoregon
Hello Sue and wellcome to this board my name is Shari.
I am so sorry for the health trials you have been going through. I know how really hard it is to deal with receiving news like that.
I believe it helps a lot to talk with others that are going through the same things or have been through some of the same trials. Also on this board you will learn so much about this disease, treatments and about how we can also be overcomers.
There are others on here on the board with RA I am one of them. I also had to go on SS disability for the RA a number of years ago. I was also on a biological immune suppressant drug 7 years ago but that wasn't when I was diagnosed with MAC but was diagnosed with Pseudomonas which had gone on for months before I got in to see a pulminologist.
The pulmonologist then took me off the immunological suppressing drug for RA immediately. I have been doing very well for 7 years with the RA while being on two different drugs to treat it that don't suppress my immune system. One is minocycline three times a week the other is plaquenil.
I also have been testing negative for Mycobacterium Abcessus for a year and a half now. I had tested positive for one year prior and did not do the antibiotics but a number of alternative treatments.
There is hope you can get through this. You need to get the best Doctors working for you. Some others here didn't take antibiotics some rotate one antibiotic for one week every month and some have or are taking the antibiotics.
Also there are some treatments coming on the scene that are easier like nebulized antibiotics or inhaled nitric oxide to name a couple.
Hang in there we are here for you!
Shari