What is the average life expectancy of untreated mac?
What is the average life expectancy of untreated mac? I am 76 years old and have decided not to take the antibiotics. I am 5’4” and weigh 100 pounds.
Thanks. Am I going to suffocate to death? What is dying like with this disease? Thank you. Carol Weinberg
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I am 78, 5’3, 103 lbs. I also do not take meds, reason given in bio. I treat with steam inhalation and acetaminophen.
I have read that, although it effects our lifestyle, it does not cause early death. I will be following to see what others have to say.
Thank you Jan. When were you first diagnosed? I was just recently diagnosed. I have an inhaler for the bronchiectasis. It helps. I also take Tylenol.
What are your symptoms? Thank you so much for your quick response. Carol
I was diagnosed with MAC in 2015 and then Bronchiectasis last year after ending up in ER coughing up lots of blood.
I have daily coughing spells bringing up about 20-30mil mucus. Bad during humid and high allergy days, which is often since I live on coast of Texas.
I started losing weight after my husband was diagnosed with cancer. He died 3 years ago next month and the following year my son was diagnosed with cancer. I attributed the weight loss to grieving and stress, but now realize it is another symptom. Add to that endless fatigue!
I have an inhaler, but I hesitate to use because of steroids causing bone loss. My mom had osteoporosis and Bronchiectasis and her continual use of steroids really caused her years of pain from broken bones.
Life gives us lots to deal with, but at least this is not life threatening, just annoying. I hope you are able to manage okay.
Keep in touch, Jan
I wonder if the inhaler causes bone loss when it only impacts the lungs? I’m going to ID doc next week and will ask him.
So sorry to hear about your losses. I hope your son is doing better.
I lost 15 pounds from bronchiectasis.
Take care! ⭐️
Hello Carol , I was diagnosed with MAI in 2020. I have chosen not to treat with the Big 3. I am 68, also have severe COPD , Bronchstasis, and severe Asthma. I do nebulizer treatments 4xday and use a rescue inhaler . I chose not to treat because of the side effects of the treatment and the probability of the the disease returning in the future. I think the biggest on going issues for me are the severe COPD & Asthma. My Mai , which I call "the blob" has remained steady for the past 3 years. I am due for a Ct scan next month to see what the blob is doing. I have had huge issues in the past with antibiotics and did not want to suffer with those side effects. I do not know how long one can live without treatment for MAC. I do exercise the best I can 5 days a week and try to keep going. Hope this helps some.
My wife has MAC and Bronchiectasis. She is on the big three… however… both her pulmonologist and ID doctor have told her several times… she may die WITH these two diseases… but will almost certainly not die OF IT if untreated.
I would be interested to hear what your ID doctor has to say about inhaler and bone loss.
My pulmonologist said I quote "the inhaler only stays in the lungs, it doesn't even go down". He said that he has a patient who has been on an inhaler for 60 years. I hope he is right.
I recently heard from 2 people, one said she has been using it for 26 years, one has been on for 20 years. They didn't have symptoms. Maybe different people react to the inhaler differently.
Thank you so much. It has been a whirlwind since my diagnosis. Very helpful to read something good. I hope your wife is doing well and that you are too!
I also will be interested it what your doctor says.
I know I may be overreacting to steroid use, but after seeing the years of pain my mother suffered from broken bones I am very cautious.
Thank you Ling