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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Jan 19 10:15pm | Replies (9354)Comment receiving replies
I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can't imagine taking these meds for the next year or more!! I'm sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I'm a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B
Replies to "I found this discussion while researching side effects for the meds prescribed for MAC, and possible..."
Jill, my pulmonologist mentioned several years ago that there is some connection between Vitamin D and MAC (or NTM). My Vitamin D count was originally at 4 and I have been treated by an endocrinologist for 2-3 years and it's now at 35! Great improvement. I was originally on the 3 drug MAC therapy every day for 2-3 years, got much better and went off them for 6 months and got real ill.
Since then, I've been on the 3 drugs EVERY OTHER DAY, 3 DAYS A WEEK. Boy, I can sure tolerate these MUCH better than every day! But I will probably be on these 3 drugs the rest of my life. I have periodic x-ray, CT scans or lung biopsies/washes every 12-18 months to check on the growth or decrease of MAC in my lungs. But today I am doing quite well.
Paula Stroud
I went on-line to try to find the action of the Calcium D Glucarate, but it mainly said that it might be used in cancer. But I still have no idea how it helped me get through the devastating blow of all the antibiotics. After 15 months on three meds, I have not had a recurrence and not one episode of bronchitis. Perhaps I am just lucky, but I was never as bad as some have described in the posts on this site, so hopefully it is gone.<br />
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Jill <br />
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Does anyone else have difficulty taking the pills due to their size?
Hi Deby! Where did you get treatment?
Applesause makes them go down without any effort.
awesome. are you still doing well?
The side effects should subside over the next month or so. If not talk to your doctor he can change and try other ones.
Hello, I too have MAC, Bronchiectasis, Hypersensitivity Pneumonitis, Interstitial Lung Disease and they say Asthma but not sure. I know believe I may have been misdiagnosed. Can you please advise what are the 5 antibiotics your taking a I take 4 for MAC + a number of other meds for the other issues I have. 1 is Bactrim I have been on for 2+ years. Please advise and thank you
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I took three drugs every day for 15 months and in the beginning I felt like you do. But I was able to adjust somehow and got over the initial malaise and depressed appetite. The only thing I took other than my usual vitamins was Calcium D Glucarate. A friend suggested it. I am not sure of the action, but I thought it made the difference and allowed me to turn the tide. You could check it out with your doctor, but I don’t think there is anything harmful. I would be interested in anyone else trying this to see if it helped.<br />
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