I was recently diagnosed with Bronchiectasis.

Posted by mmteach @mmteach, May 10, 2016

I was recently diagnosed with Bronchiectasis. No symptoms yet just starting different tests- another CAT scan, pulminary function test, and possible bronchoscopy. Any advice/suggestions would be greaty appreciated. Thank you!

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@windwalker

Thumperguy, You are a funny guy!

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Febrile Flareups and the spacing between them constitute my criterion measure of treatment results. I’m silly with glee as I near 9 months w/o swallowing an antibiotic. Don

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@thumperguy

Febrile Flareups and the spacing between them constitute my criterion measure of treatment results. I’m silly with glee as I near 9 months w/o swallowing an antibiotic. Don

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@thumperguy Wow Don - that's great news. I was just telling my friend on the phone this morning that this week marks 7 months with no antibiotics and no flare up of MAC - just saline nebs and lots of exercise.
I'm wondering if all the mask-wearing and social distancing are helping all of us avoid exposure to common respiratory bugs that lead to exacerbations - maybe a sliver of a silver lining to this awful pandemic?
Stay well and keep thumping.
Sue

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@thumperguy

Febrile Flareups and the spacing between them constitute my criterion measure of treatment results. I’m silly with glee as I near 9 months w/o swallowing an antibiotic. Don

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And hopefully you'll not ever have to again ! Best wishes !!

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@windwalker

@bomar Hi there. I see that you have just recently joined our group. Welcome. To answer your question about hearing and vision issues; it is the medications to treat mac that can give you those side effects, not the bronchiectasis itself. If you are ever put on the 'Big 3' as we like to call them; then you must have baseline tests done for hearing and vision. Sometimes one of the meds can cause hearing loss or tinnitus (ringing in the ears) another may cause temporary or permanent vision issues. Has your dr discussed putting you on a three antibiotic treatment plan? Most drs like to prescribe that, but there are other alterrnate ways to treat mac. It would depend on the specie of mac you have and the extent of your infection and susceptibility tests. Please scroll down our topic list on the Discussion Board on this group's main page. There you will find LOTS of info from our past posts.

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Thank you for your comments. I recently joined this group and am very grateful for it. I have been on a daily regime of Azithromycin, Rifampin and Clofazimine for 7 months. I have long standing glaucoma, and a history of 2 retinal detachments and very dry corneas. My respirologist decided to avoid Ethambutol because of its known visual side effects. However, I have developed blurred vision in my “ good eye” which is intermittent ( duration 2-3 hrs) and increasingly severs ( vision drops to 20/200) and occurs every few days. This is very frightening. Has anyone else experienced this problem on these meds? Thank you for any information.

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@gafica

Thank you for your comments. I recently joined this group and am very grateful for it. I have been on a daily regime of Azithromycin, Rifampin and Clofazimine for 7 months. I have long standing glaucoma, and a history of 2 retinal detachments and very dry corneas. My respirologist decided to avoid Ethambutol because of its known visual side effects. However, I have developed blurred vision in my “ good eye” which is intermittent ( duration 2-3 hrs) and increasingly severs ( vision drops to 20/200) and occurs every few days. This is very frightening. Has anyone else experienced this problem on these meds? Thank you for any information.

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Please let both your lung and eye doctors know as soon as you can. While it is more unusual, the other meds can have side effects on the eyes as well.

Specifically, too much Rifampin can cause blurred vision, and sometimes azithromycin as well. It is possible that 7 months of daily medications are building up in your system.

When my regimen was changed to daily, a couple of my dosages had to be lowered. May I ask if you are on the daily meds because 3X/week didn't work, or were you immediately started that way?

Sue

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@sueinmn

Please let both your lung and eye doctors know as soon as you can. While it is more unusual, the other meds can have side effects on the eyes as well.

Specifically, too much Rifampin can cause blurred vision, and sometimes azithromycin as well. It is possible that 7 months of daily medications are building up in your system.

When my regimen was changed to daily, a couple of my dosages had to be lowered. May I ask if you are on the daily meds because 3X/week didn't work, or were you immediately started that way?

Sue

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Thank you for your quick reply.I was never on 3x a week regime. I have been on Azithromycin 250mg/day, clofazimine 100 mg/day and Rifampin 600 mg/day for 7 months. Initially, for the 1st 2 weeks, my dose of Rifampin was 300 mg/day and then it increased to 600mg/day. I contacted my Respirologist who advised me to decrease the dose of Clofazimine to 50 mg/day ( as my brown skin color indicates it is accumulating in the body). He advised me that Rifampin could cause uveitis ( blurred vision, eye pain and redness) and to see my Opthalmologist, stop the antibiotics and call him immediately should I develop these symptoms. My Opthalmologist has advised me to see her as soon as the decrease in vision occurs ( as it lasts about 3 hours and my vision was back to normal by the time I saw her yesterday). She did not detect any abnormalities and knows the antibiotics that I am taking. She suggested I could have Amaurosis fugax (mini stroke involving the optic blood vessels) and is referring me for a Stroke work up. However, I do not have any risk factors for a stroke but am grateful to be assessed for this anyway. I feel it is the antibiotics ( Rifampin)and appreciate your very supportive comments regarding this. By the way, what a pleasure it was to read about the efficacy of Breathe Easy tea. It is my “ go to” beverage for coughing spells.

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@gafica

Thank you for your quick reply.I was never on 3x a week regime. I have been on Azithromycin 250mg/day, clofazimine 100 mg/day and Rifampin 600 mg/day for 7 months. Initially, for the 1st 2 weeks, my dose of Rifampin was 300 mg/day and then it increased to 600mg/day. I contacted my Respirologist who advised me to decrease the dose of Clofazimine to 50 mg/day ( as my brown skin color indicates it is accumulating in the body). He advised me that Rifampin could cause uveitis ( blurred vision, eye pain and redness) and to see my Opthalmologist, stop the antibiotics and call him immediately should I develop these symptoms. My Opthalmologist has advised me to see her as soon as the decrease in vision occurs ( as it lasts about 3 hours and my vision was back to normal by the time I saw her yesterday). She did not detect any abnormalities and knows the antibiotics that I am taking. She suggested I could have Amaurosis fugax (mini stroke involving the optic blood vessels) and is referring me for a Stroke work up. However, I do not have any risk factors for a stroke but am grateful to be assessed for this anyway. I feel it is the antibiotics ( Rifampin)and appreciate your very supportive comments regarding this. By the way, what a pleasure it was to read about the efficacy of Breathe Easy tea. It is my “ go to” beverage for coughing spells.

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I'm glad you acted quickly.
Have you had a sputum culture now that you have been on the antibiotics for 7 months to see how you are progressing?

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@gafica

Thank you for your comments. I recently joined this group and am very grateful for it. I have been on a daily regime of Azithromycin, Rifampin and Clofazimine for 7 months. I have long standing glaucoma, and a history of 2 retinal detachments and very dry corneas. My respirologist decided to avoid Ethambutol because of its known visual side effects. However, I have developed blurred vision in my “ good eye” which is intermittent ( duration 2-3 hrs) and increasingly severs ( vision drops to 20/200) and occurs every few days. This is very frightening. Has anyone else experienced this problem on these meds? Thank you for any information.

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@ggafica Is a respirologist the same as a pulmonologist or maybe a sub specialty?

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@sueinmn

I'm glad you acted quickly.
Have you had a sputum culture now that you have been on the antibiotics for 7 months to see how you are progressing?

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Yes, I have monthly sputum analysis. The level of MAC seen is decreasing from 4+ to “ few”. I am stopping my Aerobika use to see if that has been causing the blurry vision ( ie the increased pressure when exhaling forcefully may cause some adverse effects on the retina.) Recently, I do not produce anything but small amounts of clear mucus no matter how hard I exhale. ( I have never done any of the Forced Expiration Capacity measurements because of risk to my eyes ). I would be interested to learn if others have had any such issues with the use of Aerobika. My eye situation is pretty tenuous ( I have very high myopia, corrected with eyeglasses, etc over the years but have had many of the associated troubles ie severe glaucoma with a central scoot a in one eye now, retinal detachments, cataracts, very dry and oedematous corneas, etc which my opthalmologists have managed over the years). I do not want to risk further vision loss but I realize using Aerobika for the MAC is important. I am sure many others with MAC have had to make risk benefit decisions as well.

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@barbb

@ggafica Is a respirologist the same as a pulmonologist or maybe a sub specialty?

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I do not know. I live in Canada and I am familiar with the term Respirologist. I did find my Respirologist by searching as to who was running clinical trials on MAC in Toronto and was able to get referred to him.

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