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DiscussionClofazimine for MAC: Anyone have experience with this drug?
MAC & Bronchiectasis | Last Active: Oct 13, 2023 | Replies (60)Comment receiving replies
Replies to "Has anyone taken Clofazamine for MAC? The ID doctor my mother is going to just prescribed..."
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
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!
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.
Clofazimine is very tolerable. Just make sure to take a very good probiotic a minimum of 4 hrs apart from the meds. The skin discoloration is more like a light bronzing/sunburn. It will fade gradually over months once the medication is stopped. Clofazimine is used in combination with other drugs and is effective. It facilitates the other meds getting into the bacteria and working there. This is not a medicine you should be afraid of.
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