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Wed, Dec 4 10:52am · Anyone taking Clofazamine??? in MAC & Bronchiectasis

@anniepie Hi!! I am hanging in there! I an starting my 3rd month on Arikayce, and 4th month on Clofazimine. I dont think I have any side effects from the Clofazimine..I am having some hearing issues from the Arikayce. I also just started using a compression vest. The combination is breaking things up like never before and I'm starting to feel stronger. I'm encouraged!

Mon, Oct 7 9:19am · Water at freshwater lake in MAC & Bronchiectasis

@rits Thanks!! Will keep y'all posted!

Mon, Oct 7 9:07am · Water at freshwater lake in MAC & Bronchiectasis

@sounder27 I'm glad you're doing so gives me courage! It might be Denise…sounds familiar. My Doc also started me on a trial drug called Clofazimine a few weeks ago..I was nervous and I seem to be tolerating that well. I'm just going to stay positive!! I was wondering if Manuka honey would help with the throat issues..just a spoonful after treatment? Hang in there and keep us posted.

Sun, Oct 6 10:04pm · Water at freshwater lake in MAC & Bronchiectasis

@rits Hi! I am about to start Arikayce. I have it in the fridge and nurse coming Tuesday. I'm very nervous!!

Sun, Sep 22 11:15am · Anyone taking Clofazamine??? in MAC & Bronchiectasis

@windwalker Hi Terri!! I am actually doing a bit better! My stomach is not great..still have heartburn..but I can take Pepcid and it helps. My Doc said any stomach issues with the Clofazimine will diminish with time. So far that's the only thing bothering me..and since it was going on prior to taking Clofazimine..its probably not fair to blame!!
I am nervous about adding in the Arikayce in a few weeks!

Fri, Sep 20 2:25pm · Anyone taking Clofazamine??? in MAC & Bronchiectasis

@vetnyregr Good luck in Denver!! Keep us updated on your journey as well.

Fri, Sep 20 1:04pm · Anyone taking Clofazamine??? in MAC & Bronchiectasis

@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 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 I'm in capable hands. I'm just trying to stay positive!!!

Thu, Sep 19 10:35am · Anyone taking Clofazamine??? in MAC & Bronchiectasis

@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 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!!!