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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Nick, oh my, you have my sympathies!!! Like Shelby, I can't imagine having Cancer and MAI/MAC!! I can only recommend that you follow your doctor's orders -- and exercise (ie walk) as much as you can to get your lungs working at 'full' capacity (for you) and get plenty of rest/sleep. I'm on all 3 meds - for 3 years I took them every day. Boy, the first year I was sick with MAC and then the drugs made me quite nauseous and tired. I worked 10-11 hr days. But I found going to bed early, taking all the meds at once, and 'powering down' mentally was more tolerable than taking them in the morning. After 1 year my doctor moved to Florida (near you!), and I got the 'expert' in MAC at the teaching hospital where I go. Got feeling so well, that after several years I went off the drugs - and after 3 months began getting sick again. He put me back on the meds but lowered the ethambutol (was on 1,000 MG a day), and instead of taking the meds every day, I take them every other day. That's been 3-4 years and I am doing just great! Have had lung biopsies and lung washes and the MAC appears not to be growing.
Yep, the side effects do go away over time. But with you being on Chemo, it may be hard to know which is causing tiredness or nausea. You've certainly got your hands full -- please keep us periodically updated on how you are doing. We're all in the 'club' together! And CONGRATULATIONS on retiring!
Replies to "Nick, oh my, you have my sympathies!!! Like Shelby, I can't imagine having Cancer and MAI/MAC!!..."
Paula, thanks for the info. I was thankful to see that I'm not alone with this MAC. I'm having hard time sleeping at night and on top of that I have acid reflux and high cholesterol. Its so difficult what med I can take w/ the 3med that I'm on now. Thank you all so much for your post.
@cila Cila, I also have acid reflux (Gerds) for which I take Aciphex daily and one thing I have found helpful is to raise the head of my bed by 5 inches. An easy to understand article on it is at http://www.wikihow.com/Relieve-Acid-Reflux-with-a-Raised-Bed . Changing my bed has helped me quite a bit! You might read back on the previous posts .. different people have tried various methods .. times of days etc with the meds .. might give you some ideas of what has worked for other people. Hope this helps you. Remember you are NOT alone .. we are all on this shared journey together .. just at different points on the journey .. trying to help and support each other! Sending you a hug! Katherine
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Paula, It's amazing how similar your case is to mine. I was on meds every<br />
day for 3 years, then off. It only took a fews months before I got sick<br />
again, but a whole year of meds everyday to get back to feeling as I did<br />
when I first went off. After that year of recovering, I was put on 3 days<br />
a week but he upped the ethembutal (1500mg), not decreased. Maybe I would<br />
have done OK on every other day, but on 3 days a week, it came back. I<br />
don't know what all that means. Either I was sicker than they thought and<br />
the dose wasn't enough of maybe I'm building a resistance. Time will tell.<br />
Take care. I enjoy hearing from everyone. It's a lot of insight since I<br />
don't know a soul who has this illness.Hang in there Nick,we are all so<br />
lucky to have this in 2015, we'd have never survived before the discovery<br />
of antibiotics<br />