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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Thanks @rmason @irene5 @america for your help. I saw the pulmonologist at the Mycobacterium Clinic in the hospital today. They won't change me to Rifabutin because my damaged liver cannot take it.
They said I will have to just accept what the Rifampin is doing to my thyroid and cholesterol. That's hard because I'm so hypothyroid now I need to sleep almost all day and all night, every day, every month. Like Rip Van Winkle! But I'm not sure how I can accept that for another year or two years. Next week I will see a psychologist for some help with that.
(@america I take my Levothyroxine 8 to 10 hours apart from the Rifampin -- in the morning. I always take the TB meds/Big3 at night, as advised by my pulmonologist. Rifampin doesn't have any big problems for some people with thyroid disease but for others it does. Unfortunately it does with me).
Replies to "Thanks @rmason @irene5 @america for your help. I saw the pulmonologist at the Mycobacterium Clinic in..."
@anniepie I was on Rifabutin first and had horrible muscle, flu like symptoms and back pain after the first 2 weeks. I was switched to Rifampin. But I did do some reading about doing some kind of desensitation program to obtain tolerance
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@anniepie I am so sorry because having MAC makes a person fatigued, and then adding a hypothyroid issue to that must be debilitating for you. The cholesterol issue is a tough one too because of the impact of those meds on your liver. My brother has been in the hospital with endocarditis, the effects of which are reparable with a valve replacement. He is afraid to have the surgery. I told him I was certain if there were a surgery to fix MAC there would be a line out the door for all of us to have that fix! Realizing that bit of “luck” helped him rethink that in a hurry! The MAC road is lengthy and bumpy for many of us. Sending you a gentle hug and prayers.