I was recently diagnosed with Bronchiectasis.

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

@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.

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.

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

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.

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.

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?

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

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.

Hello MM, so glad you found this forum. Personally what I do for myself and my husband is google the name of the doctor .. hopefully by looking at EVERYTHING that comes up I can find out where they went to school (the tougher the school they could get into I figure they must be pretty bright!) .. sometimes you can see what their "interests" are .. what publications they have written. Then you can hopefully see if they have any experience in Bronchiectasis. You might call your insurance network .. get the name of every Pulmonologist .. call every single one .. AND request to be told the NUMBER of Bronchiectasis patients they have worked with in the past two years. That would be VERY important .. if they do NOT have current/recent patients .. that means they aren't keeping current with the disease.

Meanwhile research .. BUT do NOT be so scared!! You MUST be your own best advocate! IF there is NOT a specialist within your network .. you may have to raise KAIN to be referred to someone outside who CAN help you. You may have to pay 80/20 .. that is what happens to me .. but it would be worth it to get straight answers. If that happens .. try to get referred to Dr. Timothy Aksamit at Mayo Clinic in Rochester, MN. He is an expert Pulmonologist.

MEANWHILE .. it is VERY important to keep your lungs clear. The mucus in the bronchial tubes can be a breeding ground for mycobacterium resulting in a disease called MAI/MAC which happened to me. Be SURE to exercise .. get enough sleep .. eat healthy .. AND NOT stress over this. Stress is terrible for our bodies. Remember .. our bodies CANNOT take care of us .. UNLESS we take good care of it! Be kind to yourself on this our shared journey. Don't be so afraid .. I was diagnosed in 2011 .. and all I do is cough .. BIG TIME which is a pain in the batooty .. but lots of people have a lot of bigger problems than I have. Go forward in joy .. AND peace! I am sending you positive energy and big hugs! Katherine