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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@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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Thanks for asking- I had several negative cultures after about nine months then relapsed. Now on Arikayce which seems to be working so it is hard to know whether/ how clofazimine contributed to improvement but it is the easiest of the drugs to tolerate

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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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Thank you, that is really helpful information. I hope my mom will give the Clofazamine a try. She is so weary from the GI side effects that I was worried she would give up. This will encourage her I hope. She is 88 years old but was so active she appeared at least 10 years younger prior to this MAC infection. She was an avid gardener and amazing cook as well so this has changed her life dramatically. I’m glad you are showing improvement!

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@almap

Thank you, that is really helpful information. I hope my mom will give the Clofazamine a try. She is so weary from the GI side effects that I was worried she would give up. This will encourage her I hope. She is 88 years old but was so active she appeared at least 10 years younger prior to this MAC infection. She was an avid gardener and amazing cook as well so this has changed her life dramatically. I’m glad you are showing improvement!

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

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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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Hi, is this the only drug you tolerate? If you have MAC, the reason for multi antibiotic treatment is that you take it so long the bacteria tends to become resistant to a single drug. But most doctors will tell you that if that's the best you can handle, go with it.
How long have you been taking azithromycin? Have your symptoms improved?
Sue

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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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I tried to reply to you earlier, not sure what happened. My mom is on azithromycin.250/daily. Also ethambutol 400 mg/2x/day. Amikacin 3x/week . Now he also wants to start Clofazamine. She has no appetite, and her stomach is a mess. She does take probiotics but it doesn’t really help.

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@almap

I tried to reply to you earlier, not sure what happened. My mom is on azithromycin.250/daily. Also ethambutol 400 mg/2x/day. Amikacin 3x/week . Now he also wants to start Clofazamine. She has no appetite, and her stomach is a mess. She does take probiotics but it doesn’t really help.

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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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@sueinmn

Hi, is this the only drug you tolerate? If you have MAC, the reason for multi antibiotic treatment is that you take it so long the bacteria tends to become resistant to a single drug. But most doctors will tell you that if that's the best you can handle, go with it.
How long have you been taking azithromycin? Have your symptoms improved?
Sue

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Nothing else seems to work. I was also scared that the mac would get resitance to arithromycin. I use to be on 1 a day and then he went to 500 every third day. I still do the salt morning and night. I have gone a month without anything thinking i will beat this mac shit and then i can feel my spots again. One dr ask my wife if I was nuts and she said yes. My dr is good he lets me do my own thing. Mac does not show up in a chest xray.

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@garry

Nothing else seems to work. I was also scared that the mac would get resitance to arithromycin. I use to be on 1 a day and then he went to 500 every third day. I still do the salt morning and night. I have gone a month without anything thinking i will beat this mac shit and then i can feel my spots again. One dr ask my wife if I was nuts and she said yes. My dr is good he lets me do my own thing. Mac does not show up in a chest xray.

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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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@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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