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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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As I said though, this is only what I heard. I just read differently in another comment. Sometimes you must weigh the risks and benefits as well I've found. I am out outdoors person and prefer always to exercise outside instead of in a gym. Gyms have their own health risks. I can't afford a home gym. Being outside in the soil, air and near water which I usually am seems to be a health risk to MAC/NTM people also. Can't live in a bubble. We need EXERCISE to keep our lungs healthy. So pick your poison and/or your passion to do the right thing for you. Nothing scientific about this; just my thoughts after many years of this crazy disease. BEST BEST BEST to you!
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3 ReactionsYou would not know it to look at me but I have been very sick . I have NEVER had a diagnosis or an issue regarding good health care treatment until my lungs. I thought I would never find someone dealing with lungs capable to help me. This all started when my PA for Neurology saw fluid in my lungs on a CT scan of my spine for Multiple Sclerosis. That was almost 2 years ago. I finally found a smart lung doctor and it was her PA that told me a MAI/MAC diagnosis may only result after you have seen multiple pulmonologists. She was correct. I had been through 4 pulmonologists before I finally found a doctor capable of helping me. I have been extremely scared and depressed not feeling confidence in my lung care providers. Thanks be to God I know I am finally with someone capable of helping me. You know yourself and this is one place I wasn’t willing to be the sweet Southern girl who could be pushed around and told things that I knew were not correct. If you don’t feel comfortable with your doctor I would search until I found one acceptable. This is such a great method to speak with others who understand. Maybe ask others here who they use near you? I hope what I’ve shared helps you.
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3 ReactionsNo one has called what I have bronchiectasis? (I had to look that one up!). I have only been told I have MAI which you kindly told me this is a synonym for MAC. If I have MAC then do I automatically have bronchiectasis?
Thank you so much for your input! I have a difficult time understanding why my questioning funding in my home state would elicit negative comments but I agree with your assessment that people generally are not interested in research funding.
That’s very interesting that interest did surge in MAC with the AIDS epidemic. It is understandable that with compromised immunity, susceptibility goes up, but from what I’ve read, NTMs are on the rise and not only in the immune compromised. I agree that it takes a very astute doctor to even test for MAC-I wasn’t tested for over 2 years, but they certainly searched for every other possibility in my body. Perhaps if MAC/NTMs were better researched and publicized, especially in areas know to have an unusually high number of cases(again, something that would be common
knowledge of with research)doctors, who have been made aware of heightened risk, would be able to diagnosis the disease much faster. I have a lot of lung damage after going so long without treatment and I am a patient at a state university hospital(in 4 different “speciality”departments).
I truly believe there are many people walking around undiagnosed as the symptoms are so varied, in communities who don’t have access to good health care, among people lacking insurance coverage, and as you said, doctors who are blissfully unaware of these infections.
I am one more in the “secret society” of this debilitating disease. Yes, knowledge is power but sometimes I feel like we are living in an ignorance is bliss reality.
Thank you again for responding!
Just mac and bronchiectasis. I tested possitive for mycobaterium abscessus, avium, arupense and one other. Since I tested possitive more times for avium I am being treated for that.
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2 ReactionsWe have Colon Cancer in common! I had Stage 3 @ 32 and had my large intestine and 18” of my colon removed . I also have Multiple Sclerosis. I was wondering about the diarrhea but knew that I will double or triple my Limotil (an unbelievable Rx for diarrhea for those that don’t know) and that the Limotil will knock that out. Duke told me at 32 that I could not outlive Stage 3 and that it would come back as either lung or liver cancer. I also have Multiple Sclerosis. Because of my compromised immune system I believed that MAC was due to MS. I did have some lung nodules removed after colon surgery. Did you have any lung surgery with colon cancer? I read somewhere that post surgery can also lead to MAC but my lung surgery was > 20 years ago.
I have never been on the IV course. If for some reason my Dr changes course and treats me for absecsus I will be on IV. They have not taken me off ethanbutol because of eye problems.
Very good analysis. I do walk with you in that if we somehow could unite, such as cancer groups (which I am a cancer survivor as well; oddly two years before my MAC/NTM diagnosis). We could be loud and proud to try to get something for the next generation. I've done my part in the cancer thing with giving major blood for genetics research since all three of us sisters had it yet not our mom strangely. I am trying to give back by reaching out to the few I know and share knowledge. Until it's out in the open in a big way though, not much progress will be made. There are strong support groups, but no empowering groups to help the cause of first awareness and next research. I've shared with women along the way that I felt could possibly have this. I would say the main reaction is denial (I get it; I was there) and usually they do nothing about it. Not even my own sisters will be tested for it. "If we don't test, we don't have it." I totally get it. They're doing fine, so why get tested. I do believe there are many millions more out there. It's showing up in third world countries more as well as our more supposedly medically advanced countries. I just can't see the current treatments being very helpful in third world countries. Most people can't do this regime to stay healthy as it is in this country. It's staggering to do the nebulizing treatments daily and then if one has to go on the 3 drugs once again and sometimes again and again. It seems that there needs to be an immunological solution. Ideas floating. Action lacking. Let me know if you think of anything! Thanks for being part of the group and sharing your ideas.
Rick, This sounds like a tough road. I was thinking of being in a test study for Amikacin. Maybe I'll rethink it! Hoping you get an answer and on the best path! Airway clearance: good nebulizer and nebulizing solutions, nasal rinse, etc. Best to you!
Even if you get rid of MAC/NTM the bronchiectasis is always there. Airway clearance is a lifetime thing. I have cavitary MAC/NTM. I'm not sure if that's the same as what you call "abscessus." If you have cavitary, airway clearance is even more important. Best to you in finding the right doctor and in moving forward.
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