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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@sueinmn

So Garry, I'm going to ask a few questions here – I apologize if it's too much, but it might help get you some better answers.
If it doesn't show up on an xray, how did you learn that you have MAC? Did it show up in your sputum culture? And are you seeing a pulmonologist, or is your primary doc treating you for this?

Sue

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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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@sueinmn

I have a few questions about your Mom's treatment. Adding more meds to the regimen when she is already suffering so many side effects seems extreme.
Is she being treated by an Infectious disease specialist experienced in dealing with MAC specifically in older patients? Are they adding meds because her infection is worse (as shown by sputum culture or CT) or replacing the difficult to tolerate ones?
How does your Mom feel about continuing treatment?
Sue

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Hi Sue, she sees an ID doctor who does treat Mac but she is probably his oldest patient. Her sputum culture was positive and last CT scan showed maybe slight improvement. My mom wants to take a break from the antibiotics. She is tired of feeling so bad from them. We have an appointment on Jan. 31st to discuss. If she starts Clofazamine I think she will insist on taking a break from azithromycin and Ethambutol. I’m not sure what the Doctor will think of that. He does collaborate with National Jewish Health in Denver. She lives outside Milwaukee, Wi and unfortunately we don’t have a MAC specialist specifically. He seems knowledgeable though and is a good communicator. Is it common for MAC patients to take a break from antibiotics?

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@garry

What about azithromycin.It is the only drug that works for me. I am on 2 every 3rd day. gm

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Are you having any side effects from the drug? If so, what kind?

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@almap

Hi Sue, she sees an ID doctor who does treat Mac but she is probably his oldest patient. Her sputum culture was positive and last CT scan showed maybe slight improvement. My mom wants to take a break from the antibiotics. She is tired of feeling so bad from them. We have an appointment on Jan. 31st to discuss. If she starts Clofazamine I think she will insist on taking a break from azithromycin and Ethambutol. I’m not sure what the Doctor will think of that. He does collaborate with National Jewish Health in Denver. She lives outside Milwaukee, Wi and unfortunately we don’t have a MAC specialist specifically. He seems knowledgeable though and is a good communicator. Is it common for MAC patients to take a break from antibiotics?

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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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@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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