MAC antibiotics and side effects

Was on clofazimine for three years and did have the skin discoloration, extreme driness. Lots of sun proof clothing, moisturizer.
Most comfortable top in heat was from Kerrits. Heavy duty drug store moisturizers worked Ok
Everyone said how well I looked with the color as I’m usually pale. Shows how stupid it is to comment on people’s skin tone!
If you stop the medication make sure to continue sun protection for the months it will take to leave your system.
If the hair loss is bothersome you could try tiny amounts of oral minoxidil from a dermatologist- works for many over the course of a few months

@liliana, the hair loss is not from the Clofazimine. I was on a clinical trial with only it for 6 months. It was 4 months on 200mg a day followed by 100mg daily.

I had some minor occasional loose stools which were handled with daily good probiotics and colostrum powder.

The skin discoloration is real. It is more of a bronzing. The skin and hair also become extremely dry, so you will need to deep moisturize.

After stopping the medication, your skin will slowly and imperceptibly return to normal. Be sure to use sunscreen, so you don’t end up with age spots more. They tend to hold onto the color change. It takes at least a few months for the discoloration to noticeably fade away.

The infection itself or even weight loss/inadequate protein can cause the hair loss, which usually does not manifest until a few months afterwards.

Don’t be afraid of the Clofazimine. My doctor told me that she uses it all the time with patients, and it is remarkably well tolerated. It is very important to take an excellent probiotic blend first thing in the morning on an empty stomach. Also include psyllium or another extra fiber supplement to help keep the stools firm, in addition to your diet.

Hi Cila,
I am sorry about your symptoms. What I am wondering is if you felt weak and tired prior to taking the big 3. I had a bronchoscopy yesterday and my Dr is suggesting antibiotics. I am extremely hesitant due to side effects.

The first indication that I knew something was not right was the fatique. It took two years to be diagnosed. I took the ‘3’ for three years. No one ever told me that one of the three would affect my sight and one would affect my hearing. I see my optometrist regularly and he knew which one affected my sight but after three years my hearing has taken a huge hit. My sight - now corrected it is 30/20 which I was assured is still not bad. However I cannot hear anyone sitting 3 feet from me now. I would recommend you get baseline tests before beginning the big 3.

I am so sorry! Sound likes malpractice on the part of your providers. I am a musician and the potential of hearing loss scares the heck out of me. Best of luck to you and thanks for your response.

It’s not malpractice! First - it is fairly rare and not many doctors have ever treated anyone with it. Second - those who are knowledgeable don’t want to tell their patient it is not curable. Many people have a difficult time accepting that while MAC won’t cause their death they will die with it. Azithromycin is the drug that will affect your hearing so being a musician you may want to talk to your doctor to see if you want to take it or for how long. My error was not looking up the side effects for all three when they first prescribed them - but back then I thought I would be on them for a given period and then I would be cured.

Hi Arlo, the prospect of the 3 antibiotics scared most of us. I discussed it at length with my primary because the pulmonologist was not approachable. We decided that the severity of my cough and fatigue plus the many nodules in my lungs, and having asthma as well as bronchiectasis tipped the scales toward treatment. IF we had known then about 7% saline, and IF my lung CT was not so bad, we might have elected to wait and see. For the record, while the Big 3 were tough, I made it through with no effect on hearing or vision.
Have you read the latest recommendations from the Lung Assn and NJH on when to treat? Have you asked your pulmonologist why they are recommending treatment now? What did they see in the bronchoscopy and CT that say "treat now" vs "watch and wait"? Once an infection progresses to cavitary status, the treatment is less likely to be successful, the possibility of needing surgery increases and life expectancy decreases.
Please don't let fear of possible side effects drive your decision.
Sue

I agree that it was not malpractice. But, once "knocked down" by the antibiotics, many of us manage to keep the infection under control with saline nebs and airway clearance. My MAC never cleared, but I have maintained for over 3 years now. Waiting to schedule a CT and sputum culture to make sure things have stayed stable.
Are you doing airway clearance?
Sue

Yes I am nebulizing 7% saline in the morning and nebulizing 3% in the evening. I have nebulized since I was diagnosed but with 3%. I recently talked to my pulmonologist about 7%; however I can’t sleep for coughing if I use 7% before bedtime. I recently received a Hill-Rom vest that I use in the morning when nebulizing 7% saline. I just had a CT one week ago and received a call from my pulmonologist’s medical assistant yesterday there is a ‘pocket’ of mucous in the right lung. He did a bronchoscopy two weeks ago but the results are not back yet. I have always coughed up green mucous from the time I get up in the morning to when I go to bed. My sight has been affected slightly. As I wrote my optometrist knew which on would affect my sight and at my last exam he said corrected I now see 30/20 which “is still not bad”. It’s not really noticeable unlike my hearing. We are all different and what affects one ‘may’ not affect another but I was sitting 3’ from my primary care doctor 2 weeks ago and could not understand what med he said to get otc so he wrote it down. My husband is a musician and I know hearing is very important. I am in Florida and we’ve had the hottest temps we’ve ever had the last few weeks. Factor in the heat index (110 today) and I can barely breathe so I’m doing everything I can do to get this junk out of my lungs.

Hi Sue,
My latest labs indicate I have pseudomonas. I had a bronchoscopy this week Results showed 1. Bronchiectasis and inflammation of airways
2. Mucus plugging . My dr showed a a sizable vial filled with yellow mucus. She is basing all this on the need for antibiotic treatment. I am not totally confident my dr is well-versed in BE and MAC. I just viewed lab results from mucus sample taken during the bronchoscopy. It said "MTB Complex Not Detected" ... but doesn't it take a few weeks to get final results? Last year I was told I was positive for MAC. I do not understand the other lab results taken but they were all well outside of the standard range.
On a brighter note: Cedars Sinai is here in Los Angeles. It has advanced lung disease experts and I have decided to go outside the Kaiser system and get a second opinion from one of their pulmonary doctors. Needless to say, I am quite overwhelmed by all of this and trying hard to keep my equilibrium.