Anyone been able to obtain Clofazimine?

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Jay25CA
Regular Member


Date Joined Jul 2004
Total Posts : 114
   Posted 3/23/2009 11:27 AM (GMT -7)   
I am having a hard time getting FDA approval to use this drug for anti-MAP therapy.

J

Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 3/23/2009 12:14 PM (GMT -7)   
Maybe try to get in contact with Dr. Shafran, Dr. Chamberlin, or Dr. Saleh Naser, although Dr. Chamberlin prescribes Levaquin now instead I think.

Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 3/23/2009 12:15 PM (GMT -7)   
How is the anti-MAP antibotics going so far? Any improvement? Side effects?

stirling_dad
New Member


Date Joined Sep 2007
Total Posts : 8
   Posted 3/23/2009 12:41 PM (GMT -7)   
Dear Jay25CA,

If you want to email me privately, I will give you some possible ideas on
obtaining clofazamine. We went through the FDA stuff several years
ago but ultimately the doctor didn't want to take the time to fill out
the paperwork.

Also, as I mentioned in an earlier post, be sure that you are prescribed
Rifabutin (Mycobutin) and not Rifampin. Pharmacies appear to have
these as interchangeable drugs and they are not (unless something
has changed in the last few years). Our prescription specified
Rifabutin and the pharmacist filled it with Rifampin. He fixed it
after we pointed out the differences.

See this study for more info:
http://www.ncbi.nlm.nih.gov/pubmed/8785251

Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 3/23/2009 1:35 PM (GMT -7)   
stirling_dad,

I'm assuming you were on the Anti-MAP protocol? How did it go?

stirling_dad
New Member


Date Joined Sep 2007
Total Posts : 8
   Posted 3/23/2009 8:34 PM (GMT -7)   
Reef08,

No, I was not on the anti-MAP protocol. My wife was on it
but had bad reactions to both the fluoroquinolone and
rifabutin. That was over two years ago. Today,
she remains on a variant of that protocol and
is doing OK. At the time, her previous doctor
indicated that a permanent ileostomy was the
only choice.

My 11 year old daughter also was diagnosed with Crohn's
and we put her on the SC diet on the day following
the diagnosis. No other medications. Bloodwork
improved within one month and she has been symptom
free since that time (Dec. 08). The picture is more
complicated since a biopsy detected a gastrointestinal
Lyme infection. The GI still doesn't believe it but we
are working with a Lyme specialist to find an antibiotic
protocol that will minimize harm to the gut and eradicate
the Lyme. We found certain antibiotics completely
negated any positive impact of the SC diet and had
to be stopped.
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