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Old 10-30-2012, 10:42 AM #8
Idiopathic PN Idiopathic PN is offline
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Join Date: Jan 2012
Location: Jacksonville, FL
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Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
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Quote:
Originally Posted by mrsD View Post
It is possible there is a genetic weakness that is activated by the toxic drugs. The poster on PD forum here posts lots of genetic
information about statin damage being more common in people with certain genes (found with testing). So it stands to reason that genes may be a factor with these drugs too.

Not that many people take your cocktail. Not compared to the millions and millions taking statins. So statistically the reports will be less.

For example if statin side effects like PN were only 1% (and I do think that number is low), and 15,000,000 (this is a typical number seen in articles) people at random are taking the statin, then 150,000 could have this side effect.
http://www.sharecare.com/question/ho...le-take-statin

I personally think the PN effects are higher than 1%, and with more efficient reporting will go over 5% in the future.
So 150,000 people taking the drug is a huge number of people.
Compared to your very low incidence of treatment with your drugs. Ethambutol is not a common drug at all. So the numbers on your forum, and those reporting a low % incidence of side effects with be much much less frequent.

Ethambutol is a treatment for TB also...so if you look at TB forums...you might see more. The numbers of people in the WORLD taking TB drugs is much higher than US as well.
You are right, there are only a relatively few MAC patients. in fact, there are only a few members who joined are in the forum.

In a published paper (written by doctors based on USA), it says that the statistics of MAC patients may not be accurate because the infection is not reportable. I wish it will become reportable because with increased incidences, it will be sound for big pharma and perhaps governtment to fund research to imrpove the treatments. Where we are now, only a few pulmonologists know how to treat the disease properly. unlike TB, MAC is difficult to eradicate. Though, we are not contagious, statistics show that cure is 80%. If you are lucky to be cured, patient is very prone to re-infection with another strain and more aggressive bacteria.
Mrs. D, thank you very much for your information. You are always there for everyone.
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mrsD (10-30-2012)
 


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