← Return to I have Lupus and Mac..has anyone been treated for both?

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@salynn

I do have lupus and MAC and have been treated for both. I hesitated to answer because both of these conditions are extremely variable in both their presentations and the best options for treatment (if treatment is even indicated). Each case really requires an individualized approach. My lupus has always been quite aggressive, and, since the age of 17, I have been on almost every possible treatment, but rituximab has ended up being the primary treatment for me over the past 15+ years. I have to stay on it, but I do have significant immunogobulin deficiencies as a result, and I am one of a very small number of individuals with severe adverse reactions to IVIG. That said, I had no significant problems with infections until the end of 2021, when I began getting multiple respiratory infections and landed in the hospital with acute hypoxic respiratory failure and sepsis. It was at that point that they identified the MAC. Given my clinical presentation and immune status, my ID doctor strongly recommended treating it, which started in February 2022. I started on the Big 3, but I had to go off of the rifampin and the moxifloxacin used to replace it. I later started Arikayce, and I converted to sputum negative in October (although I also had to do IV ertapenem for an E Coli lung infection). I also nebulize hypertonic saline and use an Aerobika device, which are both so very important.

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Replies to "I do have lupus and MAC and have been treated for both. I hesitated to answer..."

So sorry you've had such a rough go with these conditions. Thank your your info...Debie