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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@garry

For years I had this. I would get antibiotics. Get better and it would come back. Finally a young intern sent me for a scope were they take a sample in your lungs. They grew that and found mac. Then i had a ct scan and we could see the two spots. I get one every year and nothing has gotten worse. Sputum never shows a thing because I am anti biotics all the time. Not sure what will happen when arithromycin doesn't work. I did do the big three when they first found it.
Problem I found was by the time u get to see someone and get on somthing and it doesn't work and u go back. It has really go ahold. It has gotten worse over the years or the drug is less effective . We are what we eat. My body ph is on the acidic site. That is not good. I have been working to get it alkline but the antibiotics keep it acidic. Drs are fixing the problem after we have made the problem by eating bad food. Sugar ,dairy and meat are all acid forming. Our body is smart it does everthing it can to stay alive but we keep feeding it junk. I will beat this mac and get off the antibiotics. If u are intrest read Dr Robert Morse N.D. book The Detox Miracle Source Book on amazon. It is very informative and so true. Garry

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If you still have NTM or MAC, it will show in a complete sputum culture no matter what antibiotic you are taking, but it may not show in an AFB (acid fast bacteria) slide sample (grown in 1-2 days) as is typically done in the local clinic or hospital lab. That is because mycobacteria are VERY slow growing, and the correct treatment takes time to select.

An AFB test missed my MAC and Pseudomonas completely. But a culture grown on on culture medium showed Pseudomonas after 7 days and MAC showed after 14 days. Then it took another 4 weeks to determine which antibiotics I needed to take for the MAC.

If they are doing a full culture at an experienced lab and showing no infection the possibilities are –
No infection
Not an adequate specimen (more saliva than sputum)
No sputum and a bronchoscopy is needed to get the sample.

If you are concerned about the spot on your lungs being active NTM, a bronchoscopy is the way to go, with the sample being cultured in a specialized lab and the results being reviewed by a pulmonologist or infectious disease specialist interpreting the results. This is beyond the scope of practice for most primary providers.

When you say you "can feel the spots again", how would you describe the sensation?

With Bronchiectasis, I often get a heavy, uncomfortable feeling. It generally means I have not been doing a good enough job of coughing up the mucus after nebbing, or I need to use my rescue inhaler to open up my lungs.

Have you ever tried increasing your airway clearance efforts when you get "that feeling?"

Sue

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@sueinmn

If you still have NTM or MAC, it will show in a complete sputum culture no matter what antibiotic you are taking, but it may not show in an AFB (acid fast bacteria) slide sample (grown in 1-2 days) as is typically done in the local clinic or hospital lab. That is because mycobacteria are VERY slow growing, and the correct treatment takes time to select.

An AFB test missed my MAC and Pseudomonas completely. But a culture grown on on culture medium showed Pseudomonas after 7 days and MAC showed after 14 days. Then it took another 4 weeks to determine which antibiotics I needed to take for the MAC.

If they are doing a full culture at an experienced lab and showing no infection the possibilities are –
No infection
Not an adequate specimen (more saliva than sputum)
No sputum and a bronchoscopy is needed to get the sample.

If you are concerned about the spot on your lungs being active NTM, a bronchoscopy is the way to go, with the sample being cultured in a specialized lab and the results being reviewed by a pulmonologist or infectious disease specialist interpreting the results. This is beyond the scope of practice for most primary providers.

When you say you "can feel the spots again", how would you describe the sensation?

With Bronchiectasis, I often get a heavy, uncomfortable feeling. It generally means I have not been doing a good enough job of coughing up the mucus after nebbing, or I need to use my rescue inhaler to open up my lungs.

Have you ever tried increasing your airway clearance efforts when you get "that feeling?"

Sue

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Never shows so I just assumed it was the antibiotics . U are likley right it is just a fab slide test not a long growing. I never have much flem especially if I am on antibiotics . Never had a bronchoscope since the time when they first found it.
The ct shows it. It feels like a knot. Not sharp pain just there. Maybe it’s in my head.

Garry Meadows Enerwest Dist Ltd

On Jan 18, 2022, at 3:42 PM, Mayo Clinic Connect wrote:



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@garry

Never shows so I just assumed it was the antibiotics . U are likley right it is just a fab slide test not a long growing. I never have much flem especially if I am on antibiotics . Never had a bronchoscope since the time when they first found it.
The ct shows it. It feels like a knot. Not sharp pain just there. Maybe it’s in my head.

Garry Meadows Enerwest Dist Ltd

On Jan 18, 2022, at 3:42 PM, Mayo Clinic Connect wrote:



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Hi there. Regarding your “just there” pain is it in your back? Does it go away?

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@tessa2

Hi there. Regarding your “just there” pain is it in your back? Does it go away?

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Most days it is not there if I take antbiotics. Back on the right lower side and on the front on the left

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@garry

Never shows so I just assumed it was the antibiotics . U are likley right it is just a fab slide test not a long growing. I never have much flem especially if I am on antibiotics . Never had a bronchoscope since the time when they first found it.
The ct shows it. It feels like a knot. Not sharp pain just there. Maybe it’s in my head.

Garry Meadows Enerwest Dist Ltd

On Jan 18, 2022, at 3:42 PM, Mayo Clinic Connect wrote:



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Pretty sure what you are feeling is not the spot or nodule in your lung. These are very small and contained deep in the lung tissue. Perhaps something is going on with the muscles in your chest wall that you feel. If I were in your shoes I would ask for a sputum culture or bronchoscopy before taking more antibiotics. Have you considered that?

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@almap

Has anyone taken Clofazamine for MAC? The ID doctor my mother is going to just prescribed it because she couldn’t tolerate the Rifambin. The side effects look awful. Just wondering if anyone has had good results with it. Thank you for any feedback.

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They only do that in Kelowna and it is 6 hrs away. Going to quit the antibiotic and see how it goes. Just do the salt. Thanks for your knowledge I learned somthings.

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@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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@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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@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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@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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@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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@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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