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

Posted by debbiefinfrock @debbiefinfrock, Apr 3, 2023

If anyone has been diagnosed with both conditions what has been the treatment protocol and has anyone had success with the complimentary approach: non mainstream used with main stream treatment.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 3, 2023

Welcome @debbiefinfrock, I'm tagging a few other MAC members who also have autoimmune conditions like @boomerexpert @windwalker @gaylewroc @salynn @suzylulu @america. They can share their treatment experiences with you.

Has you pulmonologist suggested treatment for you MAC at this time?

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1 reply
salynn | @salynn | Apr 3, 2023

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.

REPLY
1 reply
debbiefinfrock | @debbiefinfrock | Apr 4, 2023
In reply to @salynn "I do have lupus and MAC and have been treated for both. I hesitated to answer..." + (show)
@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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So sorry you've had such a rough go with these conditions. Thank your your info...Debie

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debbiefinfrock | @debbiefinfrock | Apr 4, 2023
In reply to @colleenyoung "Welcome @debbiefinfrock, I'm tagging a few other MAC members who also have autoimmune conditions like @boomerexpert..." + (show)
@colleenyoung

Welcome @debbiefinfrock, I'm tagging a few other MAC members who also have autoimmune conditions like @boomerexpert @windwalker @gaylewroc @salynn @suzylulu @america. They can share their treatment experiences with you.

Has you pulmonologist suggested treatment for you MAC at this time?

Jump to this post

Yes he has, but I'm waiting for a second opinion from another pulmonologist before I make a decision on which route to try. Also need to coordinate treatment options with my Rumatologist who is treating the Lupus with Hydroxychloroquine Sulfat. Thank you

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lp8 | @lp8 | Apr 4, 2023

I have lupus and 4 other autoimmune diseases. I also have MAC and Bronchiectasis. I've been on prednisone for flares but over 2.5 mg is very bad for lungs. I've tried plaquenil or hydroxychloroquine and had bad side effects. Because of all my autoimmune issues and my body's reaction to drugs I will not take the antibiotics. I nebulize 7% saline and do percussion vest for 30 minutes twice a day. It has kept my lungs in check. hasn't gone away, but hasn't gotten worse. Hope this helps you.
Lorraine

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