Daily dosage of Rifampin Ethanbutol and Azithromycin

Posted by debminuet @debminuet, Dec 4, 2018

Hi there everyon
I was treated for MAC two years ago 3 x weekly, Ethambutol/Rifampin/Azithromycin Ive recently had scan with buds showing and have symptoms and am now prescribed to take this every day and Im scared. I didnt have side effects last time but taking this every day is scary. Does anyone have any experience of daily meds as such???

@summer33

I was on every day, switched to 3x a week, Sunday’s off. Now I am back on everyday. I found that eating toast for breakfast and no dairy food helps to not have indigestion so bad. The indigestion made my throat feel on fire really bad. So far I have had a good day, seeing my doctor later about a new drug calledArikares inhaler. Has anyone else tried this medication ? At first Was not sure if I would change , but the druggist called and said it was not the bad side effects I had understood it had. I will know more after I see my Doctor today. I pray for all of us as I go through this journey with you.

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@summer33 Did you try the medication, Arikares Inhaler, and what was the outcome?

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@spencersok

@summer33 Did you try the medication, Arikares Inhaler, and what was the outcome?

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I have not tried it yet. I got a second opinion and was told to get more x rays of my lungs and sputam test
I do not like the idea of taking something that could cause blindness and loose of hearing
I will know more after the test. I do not have a bad cough or breathing bad unless I do a lot of heavy walking etc.
I will post as soon as I know what I am doing.
The big 3 seems to be what are making me feel so bad
I sometimes wonder how I would be if I stop all treatment.

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@debminuet I have been taking the big 3 daily since July. I’m also taking Arikayce daily. They are all a worry. But……so is the infection. My infectious disease doctor told me that if you were to give these drugs to a well person they would be very sick……so my question to him was…..if we are getting well and feel bad…..shouldn’t we stop the drugs because we are more well than sick and the drugs are making us feel lousy. His answer to me was no…..the biggest mistake is getting off the drugs too early…..MAC must be completely irradiated before the drugs are stopped….that’s why they have us on them 6 months after we have a negative sputum culture.

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@hydrang3a

@debminuet I have been taking the big 3 daily since July. I’m also taking Arikayce daily. They are all a worry. But……so is the infection. My infectious disease doctor told me that if you were to give these drugs to a well person they would be very sick……so my question to him was…..if we are getting well and feel bad…..shouldn’t we stop the drugs because we are more well than sick and the drugs are making us feel lousy. His answer to me was no…..the biggest mistake is getting off the drugs too early…..MAC must be completely irradiated before the drugs are stopped….that’s why they have us on them 6 months after we have a negative sputum culture.

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How do you feel.while on the Arikares ? Has it helped ?

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@summer33….it will take many months to judge the efficacy of Arikayce. I’m not feeling good but that could be the big 3 I am taking daily too or the bronchiectusis or MAC. How are U?

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I think my tired body comes from the Big 3. I am so mixed up about going on the Arikayce. My ears already ring all the time and my site is beginning to show signs. My doctor is trying to get me to start the Akrikayce as well as the druggist at his office. I talked with my pulmonary doctor and he thinks I should get a lung X-ray and sputum test before I decide. These side effects are really scarey . We have ALOT of snow and so far the doctor office is closed, so I can’t get in to get the xrays etc. I have always been very active and this has been so hard on me as well as my husband. I have tried to not complain but my weak eyes tell on me along with my being so tired. Thanks for letting me know “someone “ that has started on the Arikayce. How long have you been on this. I know taking the big 3 and the inhaler has got to be really hard and that is what concerns me. Keep me posted and I will let you know what I decide.

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@summer 33….I know how you feel. I too was very active and very healthy before my MAC diagnosis. I’ve had Bronchiectasis for years but it wasn’t a problem except that I got sick with a bad chest cold every three or four years….but I always got better and felt fine. Being treated for MAC is really challenging as it zaps your energy. When were you diagnosed with MAC?

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@hydrang3a

@summer 33….I know how you feel. I too was very active and very healthy before my MAC diagnosis. I’ve had Bronchiectasis for years but it wasn’t a problem except that I got sick with a bad chest cold every three or four years….but I always got better and felt fine. Being treated for MAC is really challenging as it zaps your energy. When were you diagnosed with MAC?

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Thought I should let you know how my Doctor visit went. I saw my pulmonary Doctor, not the infectious disease doctor. I told him how I was concerned about the Arikayce side effects. He has been treated with the injections for tuberculosis years age. So that told me he knew how this medication made you feel. He agreed with me about my concerns. He called my Infectious d. Doctor to see what his diagnosis was for me. He said he was waiting to see if the sputum shows up anything, which it has not so far. It has two more weeks to show the results. So, as of now I am off every medication for two weeks, maybe more depending on how I do as well as the sputum test. I ask how I would be if I decided not to take future treatment. He said I may cough a lot if MAC. decides to get worse. I will know more once the test come back. Hope you are feeling better.

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@summer33

Thought I should let you know how my Doctor visit went. I saw my pulmonary Doctor, not the infectious disease doctor. I told him how I was concerned about the Arikayce side effects. He has been treated with the injections for tuberculosis years age. So that told me he knew how this medication made you feel. He agreed with me about my concerns. He called my Infectious d. Doctor to see what his diagnosis was for me. He said he was waiting to see if the sputum shows up anything, which it has not so far. It has two more weeks to show the results. So, as of now I am off every medication for two weeks, maybe more depending on how I do as well as the sputum test. I ask how I would be if I decided not to take future treatment. He said I may cough a lot if MAC. decides to get worse. I will know more once the test come back. Hope you are feeling better.

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@summer33 You could also your dr about using light antibiotics as a prophylaxis ( infection preventative) that is what my Mayo doc did for me. So far, test neg for mac since 2014.

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@marilynk

I just received my Arikares kit and after reading about it not sure I want to start. I’m on the 3 meds daily – think I want to stay with them. Arikares side effects frighten me as I have a hearing loss, macular in one eye and retinopathy in the other. Has anyone been on it?

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Hi, @ marilynk I've been on the big 3 for about one year. I have bronchiectasis, was diagnosed when I was 12 and am now 52. About a year and a half ago I suddenly was ALWAYS tired, that's when I knew something was wrong. I was diagnosed with MAC and was put on the big 3, and after 9 months CT scan and spatum still showed MAC. I never had a cough, in fact I had a hard time with spatum because I couldn't cough. Being on the big 3 did decrease my fatigue,but didn't seem to have a big impact on MAC. I was and still am very concerned about the side effects of the oral meds. I asked my doc. for inhaled Amikacin in September -Arikayce hadn't come out yet. On 9/11/18 I started the inhaled amikacin, almost immediately after starting it I started to cough. It's not a horrible cough, I cough up "gunch", maybe 5x a day. I think this is a good thing because it is getting it out. My understanding is that it a sticky bacteria that gets in you lungs. In October the Arikayce became available and I immediately switched to that. The only side effect of Arikayce I've had is horse throat. If I rinse my mouth out really good after doing treatment it helps. I'm really hopeful the Arikayce will help, and like that it goes straight to your lungs, verses the oral big 3. From what I've read the side effects with IV Amikacin are very bad, but the inhaled Amikacin potential side effects aren't as severe or pervasive.

Liked by Margie E

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Thanks for that info. I do want to ask why they have to add an inhaler with the three meds – does the inhaler not work by itself? I see my pulmonary doc Fri so will hopefully find out and let you know what I find out.

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I had s similar experience. About a year and a half ago I just had a couple nodules. I started getting immuniglobulin infusions for my Immunodeficiency. There was no growth for awhile. Suddenly it just started getting active. I am showing inflammation in both lungs now and new tree and bud growth. I also started getting other types of infections. I tried the big three several months ago but could"nt tolerate it. It was highly recommended that I try again because I coughed up some blood. I was referred to UCLA and was scheduled for the day after Christmas. I am also scared but I really need to get through this antibiotic treatment. I had vision problems while on Ethambutol and pretty bad cramps and diarrhea. If anyone has any recommendations for the gastrointestinal side effects I would appreciate hearing them.

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@xfirerose

I had s similar experience. About a year and a half ago I just had a couple nodules. I started getting immuniglobulin infusions for my Immunodeficiency. There was no growth for awhile. Suddenly it just started getting active. I am showing inflammation in both lungs now and new tree and bud growth. I also started getting other types of infections. I tried the big three several months ago but could"nt tolerate it. It was highly recommended that I try again because I coughed up some blood. I was referred to UCLA and was scheduled for the day after Christmas. I am also scared but I really need to get through this antibiotic treatment. I had vision problems while on Ethambutol and pretty bad cramps and diarrhea. If anyone has any recommendations for the gastrointestinal side effects I would appreciate hearing them.

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@xfirerose Hi. If you were referred to UCLA you can't be too far from me. I live in Redondo Beach. I've been on the Big 3 since September. For about the first month and a half I had terrible stomach cramps and various forms of repeated urgent bowel movements starting about one to two hours after taking the meds and lasting for several hours. I felt afraid to try to go anywhere on "medicine days." Gradually my body seems to have become more accustomed to the drugs. I still have occasional diarrhea bouts but they are usually single bouts, not repeated. I tried different strategies at first — taking the meds with a meal that included rice, taking digestive enzymes, trying an array of time schedules. After 3 months, I would say it has been just a matter of my body getting used to the drugs. When I asked my I D doc for suggested remedies for the stomach issues, he said most patients just figure out what works fir them because everybody's different. I know it may not help, but I think he was right. You just have to find what works for you. I hope you find your way and the drugs help. Olivia

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When taking the big three does taking probiotics help?

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@londonritt

When taking the big three does taking probiotics help?

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@Havah and Onana…..Probiotics help intestinal problems but there are so many other side effects resulting from taking the big three every day as I do. I am on a high daily dosage and although the doctors are concerned about losing sight and hearing……one thing most doctors don’t prepare you for is the huge changes in your mental and emotional well being. These drugs affect every part of your brain, attacking emotion and cognitive centers as well as more obvious physical ones. It goes beyond just not feeling yourself all the way to feeling like you are inhabited by the devil. Everything looks bleak, Hope is lost. You rant, you cry. It is simply horrible. You feel completely miserable. It doesn’t last all day thank God but you can’t predict when it will come on or how long it will last. Ive been on these drugs for 6 months plus Arikayce since October and there hasn’t been a day since that I have not broken down sobbing in tears. This is not like me…in fact I haven’t felt like me since last May. I’m pretty miserable. And I am looking forward to the day I don’t have to take them.Anyone else find these drugs emotionally denilitating?

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