Hi Laura. I started the Big 3 three times a week in February, had a rocky couple of months, but am feeling much better now and coughing so much less. I take 500 mg Azithromycin and 1500 mg Ethambutol with breakfast and 600 mg Rifampin on an empty stomach (although with a full glass of water) before bed, a dosing schedule I learned on this site. And every single day I eat a 5.3 ounce container of Greek yogurt, which has kept my digestive system comfortable.
Those first couple of months, while your body is adjusting, can be tough. I too experienced some nausea and loss of appetite from the Azithromycin and Ethambutol and often felt crummy the day after taking the Rifampin. My pulmonologist said it was okay to take ibuprofen for the fever and discomfort.
My heart goes out to those taking these drugs seven days a week; that must be so much more difficult.
I hope you are able to give your body time to adjust to these powerful drugs. They are effective precisely because they are so powerful! Do you have monthly sputum testing done? My April samples just came back negative for AFB, which makes me glad I persisted through those first months of discomfort and feeling sick. Wishing you strength!
Did you struggle with anxiety? I’m on my third week of taking the medication and still struggling to feel well. So fatigued and difficult to eat. Just wondering when I might get past this feeling of being anxious, depressed and unwell?
Did you struggle with anxiety? I’m on my third week of taking the medication and still struggling to feel well. So fatigued and difficult to eat. Just wondering when I might get past this feeling of being anxious, depressed and unwell?
Hi Laura
I felt anxious through the whole wait and watch period of 5 years and then even more at the idea of starting these drugs which I did back in Jan 25. I could push the anxiety aside each time I was told we won’t treat yet but now I have joined these support groups the anxiety is much less plus i just ended up saying put on your big girl pants. Do this, so many have good outcomes and you can be one of them. More positive thinking and whatever happens, happens. There is always someone worse off than me! I lost a bit of weight when I started the drugs and I didn’t eat much probably because of the anxiety but now that I am about to start my 5th month of treatment and I’ve accepted there is nothing more I can do but continue until treatment is finished, I have much less anxiety. Acceptance I guess. I had a rough start too with side effects and had to stop ethambutol now on Clofazimine and the thought of those side effects made me anxious again but there are positive experiences from others that again reduce it. If you just get on with life, keep busy, exercise a good walk in a park or at the beach always good to clear the mind. Cook a new recipe, a quiet shopping trip and play music 🎹 music soothes the soul and the mind, have a dance all by yourself, gosh I feel relaxed already just writing this haha. But, seriously remain calm, accept and all will be good! Best wishes to you and all who are on this same journey as us x
I get the same thing sometimes, you just can’t touch yourself because it hurts. Hard to explain but for me it eventually goes away and then can come back. Weird sensation! Good luck!
Hi Laura
I felt anxious through the whole wait and watch period of 5 years and then even more at the idea of starting these drugs which I did back in Jan 25. I could push the anxiety aside each time I was told we won’t treat yet but now I have joined these support groups the anxiety is much less plus i just ended up saying put on your big girl pants. Do this, so many have good outcomes and you can be one of them. More positive thinking and whatever happens, happens. There is always someone worse off than me! I lost a bit of weight when I started the drugs and I didn’t eat much probably because of the anxiety but now that I am about to start my 5th month of treatment and I’ve accepted there is nothing more I can do but continue until treatment is finished, I have much less anxiety. Acceptance I guess. I had a rough start too with side effects and had to stop ethambutol now on Clofazimine and the thought of those side effects made me anxious again but there are positive experiences from others that again reduce it. If you just get on with life, keep busy, exercise a good walk in a park or at the beach always good to clear the mind. Cook a new recipe, a quiet shopping trip and play music 🎹 music soothes the soul and the mind, have a dance all by yourself, gosh I feel relaxed already just writing this haha. But, seriously remain calm, accept and all will be good! Best wishes to you and all who are on this same journey as us x
Thank you so much for sharing your thoughts and experience. Great words of advice and encouragement. It does help to hear how you and others have managed taking the medications. I’m hopeful I can manage as well.
Yes, I am doing daily airway clearance with 7% saline. What is Arikayce? I’m really struggling with anxiety and feeling depressed with this condition and treatment. Trying to exercise and keep my mind from dwelling on everything, but it’s been difficult. Any advice how to overcome the anxiety? Lots of prayers needed
I was diagnosed bronch with Mac in September 24. Stayed in denial till January. Now I am doing airway clearance twice a day. I was so frightened. Now after alot of education through the ntm alliance . We are going to Mayo Clinic tomorrow for more specific information. Keep you head up and don't give up. I read this everyday
Thank you so much for sharing your thoughts and experience. Great words of advice and encouragement. It does help to hear how you and others have managed taking the medications. I’m hopeful I can manage as well.
Did you struggle with anxiety? I’m on my third week of taking the medication and still struggling to feel well. So fatigued and difficult to eat. Just wondering when I might get past this feeling of being anxious, depressed and unwell?
Hi Laura. Yes, anxiety is a very common aspect of MAC and bronchiectasis and, of course, the treatments for them. But I also think that, as you continue with treatment, you simply get used to it, you're able to predict what will make you feel better or worse, and you have fewer unknowns to be anxious about.
Devon Smith, a psychologist at NJH, recommends the Psychology Today Therapist Finder as a tool to find someone experienced in chronic disease to provide support and guidance. We stay in close touch with our doctors and medical team, adjusting dosages and drugs to relieve physical symptoms - let's be willing to show the same care for our mental well-being by seeking professional attention when we need it. Sending you calm and healing wishes.
I was diagnosed bronch with Mac in September 24. Stayed in denial till January. Now I am doing airway clearance twice a day. I was so frightened. Now after alot of education through the ntm alliance . We are going to Mayo Clinic tomorrow for more specific information. Keep you head up and don't give up. I read this everyday
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Sounds a bit like allodynia. Nerve problem. Antibiotics can cause this sensation.
I’m waiting for the doctor to call back about my reaction. Never heard of that so googled it and like having the info. Thanks.
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1 ReactionDid you struggle with anxiety? I’m on my third week of taking the medication and still struggling to feel well. So fatigued and difficult to eat. Just wondering when I might get past this feeling of being anxious, depressed and unwell?
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1 ReactionHi Laura
I felt anxious through the whole wait and watch period of 5 years and then even more at the idea of starting these drugs which I did back in Jan 25. I could push the anxiety aside each time I was told we won’t treat yet but now I have joined these support groups the anxiety is much less plus i just ended up saying put on your big girl pants. Do this, so many have good outcomes and you can be one of them. More positive thinking and whatever happens, happens. There is always someone worse off than me! I lost a bit of weight when I started the drugs and I didn’t eat much probably because of the anxiety but now that I am about to start my 5th month of treatment and I’ve accepted there is nothing more I can do but continue until treatment is finished, I have much less anxiety. Acceptance I guess. I had a rough start too with side effects and had to stop ethambutol now on Clofazimine and the thought of those side effects made me anxious again but there are positive experiences from others that again reduce it. If you just get on with life, keep busy, exercise a good walk in a park or at the beach always good to clear the mind. Cook a new recipe, a quiet shopping trip and play music 🎹 music soothes the soul and the mind, have a dance all by yourself, gosh I feel relaxed already just writing this haha. But, seriously remain calm, accept and all will be good! Best wishes to you and all who are on this same journey as us x
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6 ReactionsI get the same thing sometimes, you just can’t touch yourself because it hurts. Hard to explain but for me it eventually goes away and then can come back. Weird sensation! Good luck!
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1 ReactionThank you so much for sharing your thoughts and experience. Great words of advice and encouragement. It does help to hear how you and others have managed taking the medications. I’m hopeful I can manage as well.
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3 ReactionsI was diagnosed bronch with Mac in September 24. Stayed in denial till January. Now I am doing airway clearance twice a day. I was so frightened. Now after alot of education through the ntm alliance . We are going to Mayo Clinic tomorrow for more specific information. Keep you head up and don't give up. I read this everyday
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4 ReactionsYou will and you can! You are not alone.
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4 ReactionsHi Laura. Yes, anxiety is a very common aspect of MAC and bronchiectasis and, of course, the treatments for them. But I also think that, as you continue with treatment, you simply get used to it, you're able to predict what will make you feel better or worse, and you have fewer unknowns to be anxious about.
Devon Smith, a psychologist at NJH, recommends the Psychology Today Therapist Finder as a tool to find someone experienced in chronic disease to provide support and guidance. We stay in close touch with our doctors and medical team, adjusting dosages and drugs to relieve physical symptoms - let's be willing to show the same care for our mental well-being by seeking professional attention when we need it. Sending you calm and healing wishes.
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7 ReactionsBest wishes to you as you go through treatment. Thank you for your words of encouragement. So appreciate hearing from others!
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