@gaylewroc Hi Gayle. There was discussion at the World NTM Conference back in 2016. I was there and it was a drug they discussed that held great promise. I believe some physicians can get it prescribed as a specialty drug for rare diseases. It is a good alternate for those that are found to be non-suseptable to other antibiotics. https://www.ntminfo.org/clofazimine/ When will you start the study?
@gaylewroc Hi Gayle. There was discussion at the World NTM Conference back in 2016. I was there and it was a drug they discussed that held great promise. I believe some physicians can get it prescribed as a specialty drug for rare diseases. It is a good alternate for those that are found to be non-suseptable to other antibiotics. https://www.ntminfo.org/clofazimine/ When will you start the study?
@windwalker Hi Terri!! Great to hear from you!!! Wow..I'm excited now! I started the drug yesterday! I have had several exacerbations so we decided it was time to get tough. I feel so blessed to have found Dr. Colin Swenson at Emory St. Joseph. He is running the trial!!
I had never heard of this. We will be combining with 2 others..so still 3. He has ordered Arikayce..and Azithromycin, and I have a schedule to start them over the next 2 months.
My stomach was being destroyed by Doxycycline I was taking, and I was so sore..I was afraid to dump it in there yesterday..but so far so good!!!
I had to get off amikacen, infusion, because of hearing loss within 2 months. I am on Ethrambetol, Azithromycin and RifadinIs (oral) Are their any steps before taking clofazimine? Is the dosage from this less than leprosy? The side effect are very serious. I will be seeing a doc soon to join the research. I have MAC. Any info is appreciated before I go in Oct.!
@vetnyregr Hi! I started taking on Wednesday morning...and still alive!! It was my 68th birthday...and my stomach hurt so bad from 6 weeks of Doxycycline. I was very apprehensive and depressed about it..but so far, so good. I make sure I take with a meal. My Doc said I can take pepcid 2x daily..and my stomach is doing a bit better..so I think it will be ok.
I have bronchiectases, MAC and autoimmune disease.
I should be starting the Arikayce in 3 weeks or so. Then 4 weeks..Azithromycin for my 3.
This will be my second time on the 3 drug therapy. The first time I was on for 2 1/2 yrs. Rifampin, Ethambutol and I think Clarithromycin. It did not work. It was a few years ago and I had to stop because I was losing my vision..pulsating blind spots from Ethambutol they thought. Thank goodness my vision came back (mostly).
I honestly don't know how a human being can withstand these drugs..but somehow we can.. I feel blessed that I found Dr. Swenson. This is his specialty, along with Critical care..so I'm in capable hands. I'm just trying to stay positive!!!
Please keep me posted. I go to Denver in Oct. to find out my next steps, but clofazimine is what my current Doc wants for me and she knows what my culture claimed was most effective. Staying positive is critical and is as intentional as I can get! Thanks for responding!
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@gaylewroc I haven't been on it but its great to know that they are doing MAC trials on this drug.
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1 Reaction@heathert! Have you heard of it before???
@galewroc, I am sure that I have heard of it on here. I would say to look back through the pages here but there is so many. Take care Heather
@gaylewroc Hi Gayle. There was discussion at the World NTM Conference back in 2016. I was there and it was a drug they discussed that held great promise. I believe some physicians can get it prescribed as a specialty drug for rare diseases. It is a good alternate for those that are found to be non-suseptable to other antibiotics. https://www.ntminfo.org/clofazimine/ When will you start the study?
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1 Reaction@windwalker Hi Terri!! Great to hear from you!!! Wow..I'm excited now! I started the drug yesterday! I have had several exacerbations so we decided it was time to get tough. I feel so blessed to have found Dr. Colin Swenson at Emory St. Joseph. He is running the trial!!
I had never heard of this. We will be combining with 2 others..so still 3. He has ordered Arikayce..and Azithromycin, and I have a schedule to start them over the next 2 months.
My stomach was being destroyed by Doxycycline I was taking, and I was so sore..I was afraid to dump it in there yesterday..but so far so good!!!
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Like -
Helpful -
Hug
2 ReactionsI had to get off amikacen, infusion, because of hearing loss within 2 months. I am on Ethrambetol, Azithromycin and RifadinIs (oral) Are their any steps before taking clofazimine? Is the dosage from this less than leprosy? The side effect are very serious. I will be seeing a doc soon to join the research. I have MAC. Any info is appreciated before I go in Oct.!
How are you doing, Gayle?
@vetnyregr Hi! I started taking on Wednesday morning...and still alive!! It was my 68th birthday...and my stomach hurt so bad from 6 weeks of Doxycycline. I was very apprehensive and depressed about it..but so far, so good. I make sure I take with a meal. My Doc said I can take pepcid 2x daily..and my stomach is doing a bit better..so I think it will be ok.
I have bronchiectases, MAC and autoimmune disease.
I should be starting the Arikayce in 3 weeks or so. Then 4 weeks..Azithromycin for my 3.
This will be my second time on the 3 drug therapy. The first time I was on for 2 1/2 yrs. Rifampin, Ethambutol and I think Clarithromycin. It did not work. It was a few years ago and I had to stop because I was losing my vision..pulsating blind spots from Ethambutol they thought. Thank goodness my vision came back (mostly).
I honestly don't know how a human being can withstand these drugs..but somehow we can.. I feel blessed that I found Dr. Swenson. This is his specialty, along with Critical care..so I'm in capable hands. I'm just trying to stay positive!!!
-
Like -
Helpful -
Hug
2 ReactionsPlease keep me posted. I go to Denver in Oct. to find out my next steps, but clofazimine is what my current Doc wants for me and she knows what my culture claimed was most effective. Staying positive is critical and is as intentional as I can get! Thanks for responding!
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Like -
Helpful -
Hug
2 Reactions@vetnyregr Good luck in Denver!! Keep us updated on your journey as well.