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MAC Big Three Side Effects
A few months ago I was diagnosed with Primary Immunodeficiency. My body has stopped producing immunoglobulin G. Next week I'll begin infusion therapy to replace it in my body and repair my immune system. About two months later, I learned I have MAC and bronchiectasis. About a month after I start my infusions I'll begin my antibiotics for MAC.
I'm interested in knowing about others' side effects from the big three. I'm also interested in how you manage your side effects. I know this information will really put my mind at ease. Thank you in advance.
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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The point to funding research in Florida is there must be something in the soil or water here causing so many cases of infection. Cancer research has federal funding, looking for why it occurs in some people and not others and even why there are “cancer clusters in certain areas of the country and they are looking for a cure. They look for “the why”- it’s not for a taxpayer funded government handout to cancer sufferers. The same principle would apply for Florida-to find out why the cases of MAC are exponentially greater here than in other states. Is our water supply contaminated? Is our soil contaminated? Some states DO have state funding for research into MAC-just not Florida, which has the most cases per capita. Our federal government funded research to discover the cause of TB which is a similar mycobacteria.
Let’s say your drinking water is contaminated with mycobacteria and caused your MAC lung disease, don’t you think it’s important to uncover that potential public health threat?? The research in Miami and Tampa are private facilities. If they find a correlation between the Florida drinking water filtration systems(just as an example) wouldn’t it be important to share that information so the state can test our water and make sure it is safe?
I don’t know about you but doctors took over 2 years to diagnose my MAC disease. How many more people do you think are walking around with this infection who haven’t been to doctors, who aren’t diagnosed but have been exposed and will become sick? Wouldn’t it be prudent to find the cause?
Wow, Susan, your pulmonologist sounds like my first one - he fired me AFTER I saw the ID doc - but the experience led me to a better one. If he doesn't want to provide cooperative care, I would suggest asking the ID doc who they prefer to work with.
It's interesting to hear that your MAC was diagnosed by the rheumatologist- RA can actually cause Bronchiectasis, the underlying condition that makes many of us susceptible to MAC.
As for Florida being a "breeding ground", there are pockets of MAC/NTM in many locations. My own suspicion about Florida is that the concentration of older population, with access to medical care in good clinics and with insurance, may skew the statistics.
That would be an interesting thing to study.
As for time to diagnosis, mine was over 3 years...they just kept xraying and treating me for "intractable" asthma and recurrent bronchitis - until a sharp-eyed nurse practitioner saw "something" she didn't like on an xray and sent me for a CT. You can probably read this same thing 100 times in this Support Group!
I look forward to hearing what you learn at your appointment next week.
Sue
Hello, and a belated Welcome to Mayo Connect and our group.
Have you also been diagnosed with Bronchiectasis? If so, has the pulmonologist started you on an airway clearance routine?
Sometimes, depending on the severity of a MAC infection, a wait and see approach, combined with daily airway clearance, often using 7% saline solution, can be used to decrease the level of MAC in your lungs and avoid the antibiotic regimen. This is not as scary as with most infections, as MAC is very slow-growing.
Good luck with your IG infusions, I hope they go well.
Sue
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1 ReactionI totally agree - the 2 specialties are complementary, and I won't see a doc who doesn't agree.
The wicked cough and endless infection are amazingly descriptive of my experience.
Are you also doing daily airway clearance to keep the mucus flowing out of your lungs? For me, this has been the key to avoiding repeated infections.
Sue
Has anyone had a side effect from the big 3 that causes leg swelling? I have been on the medication since Aug 2022. 2 weeks ago I failed my 2nd eye field test and my eye specialist took me immediately off ethanbutol. I saw my ID Dr the next day and he concurred. The last month my legs, especially my right one swells badly and now it doesn't go down by morning.
Sent from my iPad Ed Flory
On Mar 17, 2023, at 9:25 PM, Mayo Clinic Connect wrote:
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NTM (nontuberculosis mycobacteria) of which MAC belongs to IS in the water and soil. It is in the environment and EVERYONE is exposed to it. It’s just that some of us are susceptible to getting infected with it while most people do not get infected. Many of us get the bacterial infection because of having bronchiectasis (but not always). NTMir and YouTube have some great webinars about NTM.
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1 ReactionI would suggest everyone who is taking the ‘big’ 3 for MAC to google each one. I have been on the big 3 for two years and just now looked each up paying close attention to the side effects. I have been experiencing severe dizziness for well over a year - I even passed out once. I mentioned it to my primary care doctor but a reason was never found. I knew Ethambutol affects our eyesight and one affects our hearing (mine is getting very bad) but ALL 3 produce ‘severe dizziness’! I’m talking about getting out of my chair and walking 6 feet when I have to quickly sit down to avoid hitting the floor. In fact I did pass out once. I have mentioned the dizziness to my primary care doctor - that it negatively affects my life more than anything. When I looked into the side effects for each med ‘severe dizziness on each jumped out at me. At least now I know why!
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1 ReactionThere is a specific nebulizer and Arikayce is the liquid med that goes in that particular nebulizer.
I do the nebulizer, first with albuterol and then with saline, each morning. I have tried the vest and thiught it was horrid.