@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!!!
@gaylewrok It is so weird how drugs can affect people differently. I was on doxycycline for three yrs (10 days every other month) and had zero side effects. This just goes to show that a 'one size fits all" treatment plan for mac is not feasible. Mac treatment has to be custom tailored for each individual. How are you doing so far on the clofazimine?
@gaylewrok It is so weird how drugs can affect people differently. I was on doxycycline for three yrs (10 days every other month) and had zero side effects. This just goes to show that a 'one size fits all" treatment plan for mac is not feasible. Mac treatment has to be custom tailored for each individual. How are you doing so far on the clofazimine?
@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!
@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!
Hi Gayle @gaylewroc -- sorry I'm replying a bit late, but I only just saw this thread. I'm also on Clofazimine now.
I've been on it for 4 weeks so far. Yes it does seem to cause increased stomach issues -- I do have more heartburn (acid stomach). It is meant to be taken WITH food. And I take a probiotic with fibre every second day to try to balance the effects of antibiotics on the gut. But really for the heartburn all I can do is chew more antacid tablets.
Like other TB drugs it does have a range of side effects -- don't freak out too much when you read about them, most seem to be fairly mild.....so far. (It's actually an old leprosy drug, but fights other mycobacteria too).
Good luck with all this, Annie
Hi Gayle @gaylewroc -- sorry I'm replying a bit late, but I only just saw this thread. I'm also on Clofazimine now.
I've been on it for 4 weeks so far. Yes it does seem to cause increased stomach issues -- I do have more heartburn (acid stomach). It is meant to be taken WITH food. And I take a probiotic with fibre every second day to try to balance the effects of antibiotics on the gut. But really for the heartburn all I can do is chew more antacid tablets.
Like other TB drugs it does have a range of side effects -- don't freak out too much when you read about them, most seem to be fairly mild.....so far. (It's actually an old leprosy drug, but fights other mycobacteria too).
Good luck with all this, Annie
@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!
I'm on my 3rd week of Clofazimine. I'm having stomach issues but nothing I can't stand. My Doc told me to load up on sunscreen and keep covered from the sun. I go out in gloves, scarf, sun glasses and hat always, even to feed my birds & wild ducks. Not looking forward to doing this in the summer! My cough is looser but energy level less. I'm encouraged also, Gayle!
I'm on my 3rd week of Clofazimine. I'm having stomach issues but nothing I can't stand. My Doc told me to load up on sunscreen and keep covered from the sun. I go out in gloves, scarf, sun glasses and hat always, even to feed my birds & wild ducks. Not looking forward to doing this in the summer! My cough is looser but energy level less. I'm encouraged also, Gayle!
I don’t know about applying for a trial, I just had to sign paperwork at the doctor’s office mostly about being advised of the side effects. I started the medicine within days and I’ve been taking it for about two months now. I haven’t noticed any side effects but I have noticed that I don’t feel any better. I don’t take a lot of precautions, I use a sunscreen when I walk outside and certainly would not sit in the sun.
Renee. I did not have to apply to any trial. My ID doctor applied to get it and it took two days. I get a three month supply from my doctor’s research pharmacy. No side effects except getting orange skin which just adds color to my tired look.
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@gaylewrok It is so weird how drugs can affect people differently. I was on doxycycline for three yrs (10 days every other month) and had zero side effects. This just goes to show that a 'one size fits all" treatment plan for mac is not feasible. Mac treatment has to be custom tailored for each individual. How are you doing so far on the clofazimine?
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2 Reactions@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!
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1 ReactionHi Gayle @gaylewroc -- sorry I'm replying a bit late, but I only just saw this thread. I'm also on Clofazimine now.
I've been on it for 4 weeks so far. Yes it does seem to cause increased stomach issues -- I do have more heartburn (acid stomach). It is meant to be taken WITH food. And I take a probiotic with fibre every second day to try to balance the effects of antibiotics on the gut. But really for the heartburn all I can do is chew more antacid tablets.
Like other TB drugs it does have a range of side effects -- don't freak out too much when you read about them, most seem to be fairly mild.....so far. (It's actually an old leprosy drug, but fights other mycobacteria too).
Good luck with all this, Annie
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1 ReactionIt's November/December 2019 now Gayle @gaylewroc. How are you going on the Clofazimine? And the Arikayce?
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@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!
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Helpful -
Hug
2 ReactionsI'm on my 3rd week of Clofazimine. I'm having stomach issues but nothing I can't stand. My Doc told me to load up on sunscreen and keep covered from the sun. I go out in gloves, scarf, sun glasses and hat always, even to feed my birds & wild ducks. Not looking forward to doing this in the summer! My cough is looser but energy level less. I'm encouraged also, Gayle!
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Helpful -
Hug
1 ReactionMy ID Dr said I would have to apply for a trial to get Colfazimine. Is that correct?
I don’t know about applying for a trial, I just had to sign paperwork at the doctor’s office mostly about being advised of the side effects. I started the medicine within days and I’ve been taking it for about two months now. I haven’t noticed any side effects but I have noticed that I don’t feel any better. I don’t take a lot of precautions, I use a sunscreen when I walk outside and certainly would not sit in the sun.
Renee. I did not have to apply to any trial. My ID doctor applied to get it and it took two days. I get a three month supply from my doctor’s research pharmacy. No side effects except getting orange skin which just adds color to my tired look.