1. < MAC & Bronchiectasis

Clofazimine for MAC: Anyone have experience with this drug?

Posted by bnthorson @bnthorson, Feb 27, 2021

I am going to be starting Clofazimine along with the big three as one strain of MAC I have is resistant to Azithromyacin. I am as wondering if anyone has had experience with this drug?

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Nancy C | @nac1 | Jan 19, 2022
In reply to @sueinmn "Pretty common, I think. Over 2 years ago, at age 68, not 88, with my doctors..." + (show)
@sueinmn

Pretty common, I think. Over 2 years ago, at age 68, not 88, with my doctors ' blessing, and consultation with NJH, I quit.

Actually, switched from antibiotics to daily 7% saline and airway clearance even though I still had a positive culture because the side effects were making me miserable. So far, I have recovered 80% of my lost weight and energy, and had only one exacerbation, treated with steroids and a short course of antibiotics.

Pretty sure the MAC is still there, but it's staying quiet. So, I understand exactly how she feels, And if she was my Mom, I would support her decision.

How do you feel about letting her try it for 6 months? And what do the doctors say.?

Sue

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How many times a day do you nebulize with 7% Saline? And how much? It doesn't take long for me to nebulize. Says to use 4MLS. Is one vial per session enough?

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 19, 2022
In reply to @nac1 "How many times a day do you nebulize with 7% Saline? And how much? It doesn't..." + (show)
@nac1

How many times a day do you nebulize with 7% Saline? And how much? It doesn't take long for me to nebulize. Says to use 4MLS. Is one vial per session enough?

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I nebulize 4 ml per session, 5 times a week. I increase if I have a cough, tightness in my chest, etc to daily or twice daily. In addition I use Mucinex and NAC, 600 mg twice daily to thin mucus and I drink a lot of water and herbal tea.

I hope others will tell you their routines, as they vary a lot.
Sue

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1 reply
crepass | @crepass | Jan 20, 2022
In reply to @sueinmn "I nebulize 4 ml per session, 5 times a week. I increase if I have a..." + (show)
@sueinmn

I nebulize 4 ml per session, 5 times a week. I increase if I have a cough, tightness in my chest, etc to daily or twice daily. In addition I use Mucinex and NAC, 600 mg twice daily to thin mucus and I drink a lot of water and herbal tea.

I hope others will tell you their routines, as they vary a lot.
Sue

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Thanks Sue, I thought 2x daily was written in stone (it’s on my script). I think I will cut back unless I have an exacerbation of some sort. ( I have gone to 3x daily with a flare up last summer)

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 20, 2022
In reply to @crepass "Thanks Sue, I thought 2x daily was written in stone (it’s on my script). I think..." + (show)
@crepass

Thanks Sue, I thought 2x daily was written in stone (it’s on my script). I think I will cut back unless I have an exacerbation of some sort. ( I have gone to 3x daily with a flare up last summer)

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Actually, nothing about MAC is written in stone, we are all different. My personal schedule varies with the season, my general health, and how easily I am moving the mucus. Truthfully, if I get a coughing spell while nebbing, and bring up a ton of mucus, sometimes I even quit before the 4ml is completely gone. So far this program works for me.
Sue

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rits | @rits | Jan 20, 2022
In reply to @nac1 "How many times a day do you nebulize with 7% Saline? And how much? It doesn't..." + (show)
@nac1

How many times a day do you nebulize with 7% Saline? And how much? It doesn't take long for me to nebulize. Says to use 4MLS. Is one vial per session enough?

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The protocol is to neb 4ml 2x daily of preferably 7% but if that amount of saline is not tolerated by our lungs then 3% or even .9% (less than one %, the normal saline amount in body fluids).

Instead of clear mucus which everyone has in their healthy airways, we have sputum which is mucus plus enzymes and various other stuff the body produces to fight our disease. Sputum is thicker and stickier than mucus and gets stuck in our compromised airways.

Ntm's, like MAC, and other bacteria, like pseudomonas, and fungi are living organisms and need food to grow. In people with healthy lungs, these organisms are breathed in and out again. But where there is sputum, the organisms move in and feed on it. Saturating the sputum loosens it up and airway clearance methods such as huff breathing, aerobika, position draining, percussion vest, etc are done after the nebbing to get as much as possible of the sputum out.

The bottom line is the less sputum we have in our airways the less a feast for unwanted guests.

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Nancy C | @nac1 | Jan 20, 2022
In reply to @dulwich "I ve been on it for 18 months and darkening of skin, including age spots and..." + (show)
@dulwich

I ve been on it for 18 months and darkening of skin, including age spots and skin driness are the main side effects. People think I have been on vacation lols. You will need lots of sun protection and moisturizer
The Gastrointestinal side effects listed seem to be a non issue for most people
In practice the side effects are very benign relative to other MAC drugs and MUCH easier to take than rifampin
In terms of results it is unclear how well it works -studies are ongoing

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Are you taking the drug daily? Combined with any other antibiotics?

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marlin | @marlin | Jun 3, 2022

I was offered clofazimine by my ID doc. Has anyone here taken it and become culture negative after taking it? Also how bad is the skin discoloration after being on it for several months?
Thanks!

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2 replies
heathert | @heathert | Jun 4, 2022
In reply to @marlin "I was offered clofazimine by my ID doc. Has anyone here taken it and become culture..." + (show)
@marlin

I was offered clofazimine by my ID doc. Has anyone here taken it and become culture negative after taking it? Also how bad is the skin discoloration after being on it for several months?
Thanks!

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@marlin great question, I will look forward to answers.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 4, 2022
In reply to @marlin "I was offered clofazimine by my ID doc. Has anyone here taken it and become culture..." + (show)
@marlin

I was offered clofazimine by my ID doc. Has anyone here taken it and become culture negative after taking it? Also how bad is the skin discoloration after being on it for several months?
Thanks!

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Hi @marlin and @heathert, I moved your question about clofazimine to this discussion:
- Clofazimine for MAC: Anyone have experience with this drug? https://connect.mayoclinic.org/discussion/clofazimine/

I did this so you can connect with @bnthorson @dulwich @jenblalock @almap @sueinmn @nac1 who also have experience with this drug and may be able to share their experiences with having a negative culture after taking it and if they had skin discoloration after being on it for several months.

Marlin, have you started taking clofazimine? Are you taking other antibiotics too?

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2 replies
heathert | @heathert | Jun 4, 2022
In reply to @colleenyoung "Hi @marlin and @heathert, I moved your question about clofazimine to this discussion: - Clofazimine for..." + (show)
@colleenyoung

Hi @marlin and @heathert, I moved your question about clofazimine to this discussion:
- Clofazimine for MAC: Anyone have experience with this drug? https://connect.mayoclinic.org/discussion/clofazimine/

I did this so you can connect with @bnthorson @dulwich @jenblalock @almap @sueinmn @nac1 who also have experience with this drug and may be able to share their experiences with having a negative culture after taking it and if they had skin discoloration after being on it for several months.

Marlin, have you started taking clofazimine? Are you taking other antibiotics too?

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@colleenyoung Thanks for that

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