(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@katemn

Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit .. all you really have to do is just work with him. Keep notes about your concerns prior to your appointment .. listen to what he says .. make notes as he answers you .. then do EXACTLY what he tells you to do. That is what I did. I have absolute TOTAL confidence in him .. he is the Guru of our disease. Frankly .. if he can’t help you/me I don’t know who can. That said ..

You will ALWAYS have the Bronchiectasis .. if you do some googling you will find it is .. putting it in a simple manner .. a scarring of the bronchial tubes. It is a chronic condition that is VERY important to keep our airways healthy and as clear as possible through exercise etc because it is a breeding place for future mycobacterium to return. Because I was so concerned about the MAI/MAC I didn’t pay much attention to the Bronchiectasis until I became stable with the MAI/MAC .. now I know the importance of keeping the bronchial tubes as healthy and clear as possible.

In terms of the inhaled Amikacin .. as I recall that was for my 2nd serious mycobacteria which was an “abscesses” type . . so most people would never have to take that .. plus it was a pain in the patooty! Unless you have that CERTAIN type of mycobacterium I would not understand why you would take it!! FIRST talk to Dr. Aksamit!!

I googled: does Amikacin have clofazimine in it .. got: Clofazimine has been used as a replacement for rifampin, with similar …. we did encounter M. abscessus isolates .. http://aac.asm.org/content/56/12/6324.full

Frankly I wouldn’t give a darn about the bronze skin color or urine color if it was going to help with the MAI/MAC .. I’d have the attitude .. GET MY PRIORITIES IN ORDER!! Health is first!

I WOULD contact Dr. Aksamit’s re: any vision loss immediately. My opinion.

It was a normal part of my routine to get monthly blood tests .. quarterly vision and hearing tests sent to Dr. Aksamit.

I was told by someone I trust that Crestor was bad news .. I take Lipitor 20mg every other day in a.m. for my particular situation .. that is just my particular body. I have made the PERSONAL choice that as long as my cholesterol is at or below 200 I am not going to take any more than I am .. there are side effects to all drugs and I am already taking the max I want to!

Cataract surgery was a piece of cake for me! I had a contact lens prior to that “MONO VISION” .. one eye read and the other eye saw distance. Not everyone can adjust to that .. but I loved that as I reached middle age and only needed reading glasses. So when I had the cataract surgery .. they put a reading lens in one eye .. a distance lens in the other .. AND at age 73 I do not need glasses .. LOVE IT!!

I do not need oxygen. My oxygen level in in the high 90’s .. I try to work out on my Nordic Track as frequently as I can (NOT as often as I should!) and try keep my lungs as healthy as possible.

Yes fatigue is a part of our journey .. we MUST take care of our bodies .. so our bodies can take care of us! Our immune systems are compromised .. has to work just that much harder to take care of us. Be kind to it. Personally I try to sleep till I wake up. Usually that is about 10 hours per day. I wish it was less .. but it is what it is!

I lost 18% of my body weight at the height of my MAI/MAC .. I kept it from getting worse .. now I DO NOT tell anyone else to do this .. but I ate ice cream every night (LOVE IT!) and ate bacon for breakfast. I happen NOT to have a body that creates cholesterol and it did not create havoc on my body. AND when I became stable .. I quit that habit .. cannot even have ice cream in the house now or I’d eat it .. love the stuff! Ensure is a MUCH better idea .. I was just looking for a good excuse for ice cream at the time!!

Ok, it’s late at night .. I’m tired .. I think I answered all your questions .. hope it helps! Keep in mind .. we have all gone through this journey .. it really is not all that bad .. there truly is a light at the end of the tunnel .. you’ll get there! Just keep putting one foot in front of the other! As I keep telling my husband .. “KEEP SEEING RAINBOWS!”

Sending you Hugs, Katherine

Jump to this post

Hi Katherine…I am so grateful for your posts. You have helped me so much!
I too was diagnosed with bronchiectasis and mycobacterium abscessus in Dec
2015. I have not started on the meds yet. I’ve been terrified about
starting the meds. You have inspired me that I can do it…it will work
out. I have a couple questions…did your Dr recommend any particular
vitamins we should be taking? I’ve had a base line hearing test but no eye
test. I’m adding it to my list of questions. I don’t want my vision
affected.
Your advise has been so helpful and helped me understand this terrible
disease.I live in another state but I’m going to try to get an appt with
your Dr and hope to coordinate my treatment here in Ohio. Hope you don’t
mind but I will probably have more questions for you. Thanks again for
giving me the inspiration to fight this disease. You’ve been awesome!!!!
Your grateful friend Tutti

REPLY

Hi Tutti,
So glad you found our forum! Because Dr. Aksamit is so busy I would suggest you call ASAP because it will be a bit of time before you can get in .. but waiting for him is absolutely WORTH IT!! We were spending 6 months a year at a winter home and Dr. Aksamit FAITHFULLY sent a follow up copy of our appointment to my winter Pulmonologist .. BUT I never considered any doctor my primary EXCEPT for Dr. Aksamit .. and made every follow up appointment with him. I make my schedule work to accommodate his in getting an appointment!

You can ask Dr. A about vitamins .. but truthfully I have never found a doctor that much believes in them so never asked him .. BUT I personally am a BIG believer in them. This is just me personally .. but I read one time that Americans have the most expensive urine in the world! Ie that whatever vitamins your body does not need .. you excrete them through your urine. That is MY personal philosophy .. SO I am CAREFUL NOT to take more than the recommended fat soluble viamins (The fat-soluble vitamins, A, D, E, and K, are stored in the body for long periods of time and generally pose a greater risk for toxicity when consumed in excess than the water-soluble vitamins.) But I take plenty of the other water soluble vitamins. Personally I take the generic CENTRUM SILVER .. BUT I ALWAYS compare the generic with the actual Centrum Silver. I have found some generic brands sneaky! They are NOT equivalent! I have also added various water-soluble vitamins .. but do not feel comfortable advising .. to each their own. I would add that because I have some blood in my coughing Dr. A advised me to stop fish oil and baby aspirin .. anything that is blood thinning.

DEFINITELY ALWAYS get baseline hearing and vision tests prior to starting MAI/MAC meds. AND ALWAYS request a copy of each of your tests. 1. For your personal records for future use 2. To share with any doctors who might want to see them 3. In case you want to change doctors 4. To take with you when you travel

Tutti, you call this a “terrible disease”. I will share with you something wonderful that was shared with me when I was diagnosed. It was “If we all put our troubles in a great big circle .. more than likely EACH of us would take back our own troubles!”

Now isn’t that just wonderful?! Each time I go to Mayo Clinic in Rochester MN .. see what I see there .. the people with BIG problems .. I repeat that saying to myself .. YES! I absolutely WOULD take back my own troubles! There are SO MANY people in this big world who have SO MANY bigger problems than I have. I have SO many wonderful blessings in this beautiful world we share .. this disease is just a lousy inconvenience I have to get through! There is a thought that each evening we should out loud state 3 “gratitudes” for that day .. maybe just that someone smiled at us that day .. that there was sunshine that day .. OR didn’t rain that day .. or a beautiful sunrise .. or sunset .. or you saw a beautiful flower .. or you spoke with a supportive friend .. OR whatever .. SEARCH for a gratitude! They are there if we just look for them! Being positive helps us get through life in a happier way .. when you wake up in the morning .. it is my opinion .. I can CHOOSE TO BE HAPPY! So I DO!! You can also!

REPLY
@katemn

Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit .. all you really have to do is just work with him. Keep notes about your concerns prior to your appointment .. listen to what he says .. make notes as he answers you .. then do EXACTLY what he tells you to do. That is what I did. I have absolute TOTAL confidence in him .. he is the Guru of our disease. Frankly .. if he can’t help you/me I don’t know who can. That said ..

You will ALWAYS have the Bronchiectasis .. if you do some googling you will find it is .. putting it in a simple manner .. a scarring of the bronchial tubes. It is a chronic condition that is VERY important to keep our airways healthy and as clear as possible through exercise etc because it is a breeding place for future mycobacterium to return. Because I was so concerned about the MAI/MAC I didn’t pay much attention to the Bronchiectasis until I became stable with the MAI/MAC .. now I know the importance of keeping the bronchial tubes as healthy and clear as possible.

In terms of the inhaled Amikacin .. as I recall that was for my 2nd serious mycobacteria which was an “abscesses” type . . so most people would never have to take that .. plus it was a pain in the patooty! Unless you have that CERTAIN type of mycobacterium I would not understand why you would take it!! FIRST talk to Dr. Aksamit!!

I googled: does Amikacin have clofazimine in it .. got: Clofazimine has been used as a replacement for rifampin, with similar …. we did encounter M. abscessus isolates .. http://aac.asm.org/content/56/12/6324.full

Frankly I wouldn’t give a darn about the bronze skin color or urine color if it was going to help with the MAI/MAC .. I’d have the attitude .. GET MY PRIORITIES IN ORDER!! Health is first!

I WOULD contact Dr. Aksamit’s re: any vision loss immediately. My opinion.

It was a normal part of my routine to get monthly blood tests .. quarterly vision and hearing tests sent to Dr. Aksamit.

I was told by someone I trust that Crestor was bad news .. I take Lipitor 20mg every other day in a.m. for my particular situation .. that is just my particular body. I have made the PERSONAL choice that as long as my cholesterol is at or below 200 I am not going to take any more than I am .. there are side effects to all drugs and I am already taking the max I want to!

Cataract surgery was a piece of cake for me! I had a contact lens prior to that “MONO VISION” .. one eye read and the other eye saw distance. Not everyone can adjust to that .. but I loved that as I reached middle age and only needed reading glasses. So when I had the cataract surgery .. they put a reading lens in one eye .. a distance lens in the other .. AND at age 73 I do not need glasses .. LOVE IT!!

I do not need oxygen. My oxygen level in in the high 90’s .. I try to work out on my Nordic Track as frequently as I can (NOT as often as I should!) and try keep my lungs as healthy as possible.

Yes fatigue is a part of our journey .. we MUST take care of our bodies .. so our bodies can take care of us! Our immune systems are compromised .. has to work just that much harder to take care of us. Be kind to it. Personally I try to sleep till I wake up. Usually that is about 10 hours per day. I wish it was less .. but it is what it is!

I lost 18% of my body weight at the height of my MAI/MAC .. I kept it from getting worse .. now I DO NOT tell anyone else to do this .. but I ate ice cream every night (LOVE IT!) and ate bacon for breakfast. I happen NOT to have a body that creates cholesterol and it did not create havoc on my body. AND when I became stable .. I quit that habit .. cannot even have ice cream in the house now or I’d eat it .. love the stuff! Ensure is a MUCH better idea .. I was just looking for a good excuse for ice cream at the time!!

Ok, it’s late at night .. I’m tired .. I think I answered all your questions .. hope it helps! Keep in mind .. we have all gone through this journey .. it really is not all that bad .. there truly is a light at the end of the tunnel .. you’ll get there! Just keep putting one foot in front of the other! As I keep telling my husband .. “KEEP SEEING RAINBOWS!”

Sending you Hugs, Katherine

Jump to this post

Hi Katherine,

Glad to hear from you! I did want to mention, Dr Aksamit said I would be a
good candidate for that amikacin test trial. That’s why I am asking about
it. He ordered some test in May that will tell him about the color of my
skin, my weight loss, poor appetite, tiredness, which all the doctors are
concerned about as I deteriorated a lot. If there could be an underlying
problem! I am referring to my gp doctor, my dermatologist, and the lung
doctor down here who are keeping tabs on all this. The ritual of pills I
took didn’t stop the bacteria. I forgot about the hearing too, I do have a
hearing aid but forgot if I was supposed to be tested every so often like
the eyes. But temporary I am off ethambutol. My sister use to tell me get
off Crestor but I wanted doctors orders to stop taking it and doctor
Aksamit took me off. That’s a question for Dr Aksamit. However I won’t
see him in May until he has time to study the test I am taking.

Hugs to you too, I am 76, healthy all my life until 6 yrs ago! I am
grateful for that as for many other things. More later, really enjoy
visiting with you!

REPLY

Hello e345l, will it be inhaled Amikacin if you go on it? If so .. let me know and I’ll let you know a couple of time saving things I did when I was on it! I know it took 30 months .. BUT the Amikacin finally licked that darn “abscesses” mycobacterium so in the end all the trouble was worth it! Good luck as we go forward on our shared journey!

REPLY

HEY! I Mentioned in an earlier post that any doctor I have talked to didn’t seem to have a positive attitude toward additional vitamin intake .. EAT HEALTHY was what I usually got. BUT as I mentioned .. I still did my due diligence and took them anyway .. BECAUSE I just don’t think science has caught up with the complexity of the human body yet .. or certainly won’t in my lifetime! SO .. lo and behold .. just read this article .. interesting!!
http://www.newsweek.com/vitamin-stops-aging-process-organs-study-453526
This is just one little nugget of info!

Don’t know if anyone is interested .. but I found it fascinating! My son sent me this link to a course he is attending next week. Amazing to me .. a woman who grew up in Montana without running water .. NOW my son is attending this kind of thing .. WOW! The changes in the world are just astounding!! Watch the video .. it will blow your mind .. wish I was 25 years younger and attending!
http://singularityu.org/executive-program/
Best to all! Katherine

REPLY
@katemn

Hello e345l, will it be inhaled Amikacin if you go on it? If so .. let me know and I’ll let you know a couple of time saving things I did when I was on it! I know it took 30 months .. BUT the Amikacin finally licked that darn “abscesses” mycobacterium so in the end all the trouble was worth it! Good luck as we go forward on our shared journey!

Jump to this post

Hi Katherine,
I believe it is the inhaled one. In my notes from Dr A. he mentioned
pending clinical response from what they are doing May 15th, there’s a
possible enrollment into the liposomal amikacin versus off label amikacin
with or without clofazimine which has rifampin which I was on a full year
and did no good and switched to rifabutin for 10 months which was stronger
and no results yet. Please tell me everything you can about this
amikacin. I believe I was told it was inhaled. I really appreciate the
links you sent me, I haven’t read it yet but plan on doing that today. I
don’t know how to find this type of information and you can find it! It
seems I am absent minded a lot anymore!

Have you heard of the Leprosy drug or shot? They considered that but that
too turns your skin very dark! And it isn’t approved by the FDA. They
said it was safe. I just don’t like the name of it, fear of looking like
a leper! They assured me that wouldn’t happen!

You mentioned the hearing problem and this morning my ears are so plugged
up! For 3 hours! They have never been plugged up before, don’t know why.
I have been off ethambutol and the other meds for 4 weeks now so I
shouldn’t experience any ear trouble. Yours was mostly loss of hearing?
Today I am getting a sonogram on my carotid artery that was operated on
about 7 years ago. Hope that isn’t plugged again. I won’t do that
operation again!

My skin is turning back to normal and I won’t have t hat nice suntan look!
Darn. I figured it is the rifabutin but they want to check to see if any
other damage has been done.

Thanks again for sharing

REPLY
@colleenyoung

@cacallahan, this is exactly the place to bring such problems. Here is where you can talk frankly about your fears and concerns with people who’ve been there. Tell us a bit more about the meds you’ll be taking and what concerns you the most.
What 4 medications will you be taking?
What side effects have you been told about? Which ones concern you the most?

Jump to this post

Hi, just wanted to comment on your situation. I am sorry you got so sick!
I was very lucky and never got sick on taking 3 meds-every day practically
all day long to avoid getting sick. For one year I did the azithromycin,
rifampin and ethambutol, the concentration as yours. Didn’t stop it. Next
9 months I took clarithromycin, 2 tablets daily, ethambutol 2 tablets daily
and 2 rifabutin daily.
Never got sick. I separated them from morning, noon and evening and it
worked great. I took heavy doses. We’ll see what the next meds I will be
on do, but so far I am grateful. Hope it gets better for you! Never took
the pill for nausea that you take. Hang in there!

REPLY

@cacallahan and others on the meds for MAC/MAI —

There are at least 3 ‘standard’ drugs that work in synergy with each other. I’ve been on Rifampin, Ethambutol & Azithromycin since 2007-2008. Yes, I had side effects. See my previous messages on this blog.

IMPORTANT THINGS TO KEEP IN MIND:

1) THE NAMES OF THE DRUGS — there are different names for very similar (or the same) drugs
2) DOSAGE OF THE DRUGS – the amount is based on BODY WEIGHT. So 2 people here can be on the same drugs but in different dosages. My 1st pulmonologist had me on too high a dosage and my 2nd pulmonologist lowered the amount of one drug – – and it alleviated the nausea. Ask your doctor to verify that you are taking the correct dosage for your weight, if you have a concern.
3) SEVERITY OF MAC/MAI — this differs among us. My MAC was quite severe when diagnosed and required me taking the 3 drugs everyday. After several years and feeling better, the drugs were reduced to 3 days a week.
4) WHEN TO TAKE THE MEDS — per my pulmonologists at a teaching hospital (and I’ve written this earlier), I can take the drugs whenever I want, but consistency is the key. It doesn’t matter what time of day or night I take the drugs, or whether before or after food. They said to find what works for me, and to faithfully take them in this pattern.
5) SOURCE OF THE DRUGS — unfortunately, I’ve found when switching health insurance plans or pharmacies, that the same drugs can come from differing manufacturing centers. And the nausea can start all over again! So you can get a batch of the drugs that may cause nausea for you, depending on where they were manufactured.
5) TESTS — I’ve had 2 lung biopsies and 1 lung lavage (filling the lungs with fluid and suctioning out the fluid, cells & bacteria). My pulmonologist is very thorough and knowledgeable about MAC/MAI.

I am alive and feeling very good!! Some keys to treating your MAC/MAI:
1) take the meds faithfully (if you’ve been prescribed them)
2) get plenty of rest
3) EXERCISE to strengthen your lungs. I do Pilates and gentle Yoga 4-5 times a week. Try to briskly walk for 20 minutes a day.
4) Vitamin D – get yours checked. There’s a correlation between low Vitamin D & MAC.
5) Get your eyes checked routinely since one of the drugs can cause blindness. My ophthalmologist is familiar with the drugs & had another patient on them who he had to take off the drugs.
5) Talk with your pulmonologist about everything you don’t understand. Become your own advocate for your care – knowledge is power. This site has a lot of excellent practical information.
6) Avoid potential sources of bacteria . . . hot tubs, spas. I don’t take showers – just baths! (trying to be on the safe side). Take care of your lungs.
6) Stay positive! Sometimes hard to do.

Blessings to all!
Paula

REPLY
@Paula_MAC2007

@cacallahan and others on the meds for MAC/MAI —

There are at least 3 ‘standard’ drugs that work in synergy with each other. I’ve been on Rifampin, Ethambutol & Azithromycin since 2007-2008. Yes, I had side effects. See my previous messages on this blog.

IMPORTANT THINGS TO KEEP IN MIND:

1) THE NAMES OF THE DRUGS — there are different names for very similar (or the same) drugs
2) DOSAGE OF THE DRUGS – the amount is based on BODY WEIGHT. So 2 people here can be on the same drugs but in different dosages. My 1st pulmonologist had me on too high a dosage and my 2nd pulmonologist lowered the amount of one drug – – and it alleviated the nausea. Ask your doctor to verify that you are taking the correct dosage for your weight, if you have a concern.
3) SEVERITY OF MAC/MAI — this differs among us. My MAC was quite severe when diagnosed and required me taking the 3 drugs everyday. After several years and feeling better, the drugs were reduced to 3 days a week.
4) WHEN TO TAKE THE MEDS — per my pulmonologists at a teaching hospital (and I’ve written this earlier), I can take the drugs whenever I want, but consistency is the key. It doesn’t matter what time of day or night I take the drugs, or whether before or after food. They said to find what works for me, and to faithfully take them in this pattern.
5) SOURCE OF THE DRUGS — unfortunately, I’ve found when switching health insurance plans or pharmacies, that the same drugs can come from differing manufacturing centers. And the nausea can start all over again! So you can get a batch of the drugs that may cause nausea for you, depending on where they were manufactured.
5) TESTS — I’ve had 2 lung biopsies and 1 lung lavage (filling the lungs with fluid and suctioning out the fluid, cells & bacteria). My pulmonologist is very thorough and knowledgeable about MAC/MAI.

I am alive and feeling very good!! Some keys to treating your MAC/MAI:
1) take the meds faithfully (if you’ve been prescribed them)
2) get plenty of rest
3) EXERCISE to strengthen your lungs. I do Pilates and gentle Yoga 4-5 times a week. Try to briskly walk for 20 minutes a day.
4) Vitamin D – get yours checked. There’s a correlation between low Vitamin D & MAC.
5) Get your eyes checked routinely since one of the drugs can cause blindness. My ophthalmologist is familiar with the drugs & had another patient on them who he had to take off the drugs.
5) Talk with your pulmonologist about everything you don’t understand. Become your own advocate for your care – knowledge is power. This site has a lot of excellent practical information.
6) Avoid potential sources of bacteria . . . hot tubs, spas. I don’t take showers – just baths! (trying to be on the safe side). Take care of your lungs.
6) Stay positive! Sometimes hard to do.

Blessings to all!
Paula

Jump to this post

Paula, thank you for all that wonderful information. I’m just starting the
three drugs and I have an even more specific question. I’m going to spread
my three throughout the day but for instance, the three ethambutols each
Monday, Wednesday and Friday…
Can I do one in the morning, one at noon and at night or do the three have
to be taken at one time. Same question for the 2 Rifampin pills…(and I
only have one Azithromycin to take). Nan

REPLY

@nanette, Hello Nan, I hope you are doing OK.

RE: your question – can you spread your drugs out throughout the day? My questions to you: Did your doctor make a recommendation on how you should take them? Or your pharmacist?

When I initially began the drugs, my pulmonologist told me about former patients in the Clinic on the drugs, their experiences with them, how they took the drugs to overcome side effects, etc. He said I could take the drugs spread out throughout the day, take them all at one, take them in the morning or at night, with or without food, etc. In other words, he gave me his experience with other patients and told me to find what works FOR ME when taking the meds. Just to be sure to take them consistently each day. I’ve taken the drugs every which way – – except space them out throughout the day. I just would never remember to take them that way!

My suggestion to you is to ask your pharmacist or pulmonologist about the efficacy of taking 1 drug 3 times a day instead of all at once. They may have a different point of view.

Any other questions or comments, we’re all here to learn from – and help – each other.

Paula

REPLY
@Paula_MAC2007

@nanette, Hello Nan, I hope you are doing OK.

RE: your question – can you spread your drugs out throughout the day? My questions to you: Did your doctor make a recommendation on how you should take them? Or your pharmacist?

When I initially began the drugs, my pulmonologist told me about former patients in the Clinic on the drugs, their experiences with them, how they took the drugs to overcome side effects, etc. He said I could take the drugs spread out throughout the day, take them all at one, take them in the morning or at night, with or without food, etc. In other words, he gave me his experience with other patients and told me to find what works FOR ME when taking the meds. Just to be sure to take them consistently each day. I’ve taken the drugs every which way – – except space them out throughout the day. I just would never remember to take them that way!

My suggestion to you is to ask your pharmacist or pulmonologist about the efficacy of taking 1 drug 3 times a day instead of all at once. They may have a different point of view.

Any other questions or comments, we’re all here to learn from – and help – each other.

Paula

Jump to this post

Paula, my doctor nor my pharmacist made recommendations so I should have
asked. But I have a close friend who is a pharmacist and I will ask her.
Thank you. Nan

REPLY

Nan, how surprising your doc didn’t give you info on taking the drugs! But you have a friend who is a pharmacist that you can ask – that’s great! Keep us posted on how you’re doing.

REPLY
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