HealingWell
Search Close Search
☰

Anti-Map therapy and Clofazimine

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/23/2010 2:56 AM (GMT 0)
Is anyone here curren tly on Clofazimine for Anti-Map therapy?

I have been waiting for approval for the clofazimine and just got my pills today. Then looked online and apparently it "causes skin to darken to brownish-black in 75% to 100% of patients." Oh dear. LOL

Infectious disease Dr is watching things and he mentioned about a slight skin darkening, similar to a tan. That would be fine, but I'm thinking he may have downplayed the side effects, considering a couple people committed suicide because of the severe skin darkening (!) Holy cow! shocked

Anyway, I would love to hear if anyone is currently on clofazimine and how much it darkened or reddened your skin..thanks!

Posted 7/23/2010 10:14 AM (GMT 0)
One of the anti-map drugs my daughter took turned her sweat, skin, and urine an orange color but I just noticed the name of your drug is a different one.

Post Edited (mastersmom) : 7/23/2010 4:21:41 AM (GMT-6)

Posted 7/23/2010 9:09 PM (GMT 0)
hi there,
How orange? did it look like tan in a can? Was she so dark people would turn around and stare? (sorry) and did the whites of her eyes turn orange, too?
Was she on Lamprene ? (sp?)
It's the same as clofazimine..
Posted 7/24/2010 6:50 PM (GMT 0)
The three antibiotics my daughter was on were Rifabutin, Clarithromycin, and Levaquin. Rifabutin and Rifampin are related. As I recall, Rifabutin is more expensive and the one preferred by her doctor but he told her Rifampin was acceptable if that is all she could afford. Both of those drugs state in the side effects brown/orange urine, tears, sweat, stool, skin, etc. I think one of the other antibiotics she took also had that as a side effect. I looked up the drug you are asking about, clofazimine, and it said skin, etc., would turn brown/black in 75 - 100% of the patients. So it looks like you are getting this reaction from more than one of your drugs. They all said this was harmless and reversible when the drug was discontinued.

I remember that my daughter did have this problem, even the white's of her eyes were dark. She also had, from Levaquin, such sore joints and muscles that she could hardly put a shirt over her head or wash her hair. She was walking like she was very old. All of this has gone away now.
Posted 7/25/2010 3:02 AM (GMT 0)
Thank you for the info :) I'm just going to try not to worry about it for now.. I have already been on rifampin and clarithromycin for 2 months and no side effects except the rifampin makes my urine orange.. that's all.
Rifabutin was not an option- docs said we don't have that here and that rifampin was the equivalent?

And the Clofazimine was a BIG deal to get- everyone else I have heard from has gotten denied for this drug. From what I understand, it's an orphan drug only availabe overseas and you need special govt permission to order it, and have it specially approved, because it's not even approved for our country...
Right on the bottle it says experimental use only. But I still don't understand why people in the States are getting prescibed other antiboitics in it's stead. All the sucessful studies I have read include clofazimine. In fact, if I had ultimately gotten rejected for clofazimine, there was no "plan B" . There is no substitute for the clofazimine, I've been told, and it's the most important of the 3 in the anti-MAP plan.
Posted 7/25/2010 4:57 AM (GMT 0)
It is very confusing because so often when I talk with people on anti-map treatment, their doctor has chosen different antibiotics. I guess doctors have different opinions on what is best. You can check my daughters complete story from past posts but I can tell you that we went to Dr. Chamberlin who has been treating people with this cocktail for some time and it put my daughter in remission. We were able to get Rifabutin in Texas where he is and then continued ordering it from that pharmacy, only because it was much cheaper than the pharmacies in Ohio. They all had access to the drug though and we could have purchased it here. If Clofazimine is the most important one, I'm glad the 3 she took worked for her although maybe the doctor would have switched antibiotics to others if her colonoscopy had not been clear.

So have you noticed any improvement in your Crohn's? I wish you luck.
Posted 7/25/2010 5:09 AM (GMT 0)
mastersmom- I am so glad it put your daughter in remission!!
I am hoping for the same, but this is ony my 3rd day of clofazimine so I have to wait and see.
I haven't noticed a difference from the rifampin/biaxin yet...
I will surely post if things improve!
Posted 8/28/2010 4:54 AM (GMT 0)
Tara28, please let me know how you're doing. I am considering the RMAT therapy. Seems like such a hassle to get though since my doctor isn't a believer. Thanks.
Posted 8/28/2010 6:18 AM (GMT 0)
is there anyone who has actually had success from MAP therapy? if so, that seems to be the exception rather than the rule
Posted 8/28/2010 12:42 PM (GMT 0)
There was someone a while ago who was on it for a number of months but he ended up needing surgery. Jay someone?
Posted 8/28/2010 3:07 PM (GMT 0)
Rider is correct. I think his name was JavaJay (?)
✚ New Topic ✚ Reply