Author Topic: HS Medication question. What are you on and how did it work?  (Read 5896 times)

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Offline OregonGirl

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HS Medication question. What are you on and how did it work?
« on: Friday January 26, 2007, 05:43:05 PM »
Ok. Yesterday I went to the dermatologist... which it was only my second visit to this doctor. I live in a town of over 150k people but cannot find a dermatologist that has dealt with HS. So I have talked to this lady and gave her all the info I have and she supposeably is researching HS to see what she thinks may work best. Currently she has me using antibacterial soaps (obviously) to shower along with Minocycline which I just started taking yesterday. I guess my question is the age old one with HS... what have you taken and what is working for you?

I am overweight and when I started trying to get this under control a year ago I decided to lose weight. I have lost 47 pounds and so I watch everything that goes in my mouth and exercise. The break outs on the inner thighs have actually gotten worse since I lost weight and have spread farther up in the bra area.... The under arms are better but now its spread to other places.

At this point I am willing to try most anything that wont risk my health. ???

Offline feidilin

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Re: HS Medication question. What are you on and how did it work?
« Reply #1 on: Friday January 26, 2007, 05:51:26 PM »
I don't think weight has as much to with HS as some people think since it's an auto immune disease (My opinion). MY family on my fathers side is all shapes and sizes and my skinny aunt has it worse then my overweight aunt. Unfortunately I have it worse then all of them with starting to get sores at age 7 and having a major surgery because of HS when I was only 22. I haven't read a whole lot about HS. I'm just starting to actually do research myself since it seems like not many doctors know what it even is. Although when I get a real bad sore (I usually have 5-7 sores at one time) that just seem to get bigger without actually "popping" (after hours of hot packing to open it up for relief) I usually get put on Keflex and it clears them up for the time being (usually a couple of weeks) But WOW 2 weeks pain free and bump free are worth it!
Blessed be

Offline OregonGirl

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Re: HS Medication question. What are you on and how did it work?
« Reply #2 on: Friday January 26, 2007, 05:57:41 PM »
When I started this adventure of actually getting it taken care of and under control I was floored that I had done more research than any of the doctors I have talked too. I wouldnt imagine that something like this wouldn't have a medication for it. I really come to a frustrating end each time I research the issue.

I will look up Keflex when I have time but does this only work as a temp treatment? Is it not something you can take to keep outbreaks away?

Fortunately I am the only one in my family that has it (unfortunate for me though) So its not something anyone of us knew about. So they all look at me like I had some weird disease when they first saw it :(

Offline feidilin

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Re: HS Medication question. What are you on and how did it work?
« Reply #3 on: Friday January 26, 2007, 06:49:30 PM »
Keflex is an antibiotic and it is only temp. My aunts have been on every acne type of medication and then someothers. nothing worked for them. I've just come to conclusion of dealing as it happens and only using keflex when it drain or disappear on it's own. I have 10x worse then any one in my family. HS was always referred to as the family curse being passed on generation to generation. The only reason we now know the name of this is because of my surgery and the doctor had one site biopsied. I've only found 2 doctors that are even familiar with HS and both have told me that there isn't any way of treating long term except surgery, but HS will come back in those areas after awhile. I'm starting to break out again in those areas approx 12 years after my surgery. The Dermatologists that are familiar with HS told me that the only other medical option is keflex or an antibiotic to help fight the areas that are active. I've down everything from meat tenderizer on sites to surgery and I've just finally almost 30 years later, come to terms with the fact that I have to deal with each breakout as it happens and I always cross my fingers that I don't get any more on my face and that my son never gets anymore then the one he got on his arm. It's kind of a sad and depressing outlook but it's allot better then trying all these different things only to have them fail (which I found harder to deal with)  and you can only get so many surgeries done since the skin has to be stretched over the area that was removed.
Blessed be

Offline gradgirl

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Re: HS Medication question. What are you on and how did it work?
« Reply #4 on: Sunday January 28, 2007, 06:58:50 PM »
Hi, Sorry that your HS is being so wily and awful.  I haven't progressed very far, although recently I had a major break out when I was on the antibiotic tetracycline using it long-term.  (Recurring major site in groin, new ones in armpit, new sinus track from groin to anal area.)  Some of us have been taking the spice turmeric in capsule form or as a tonic (1tsp in water 3x a day), and we've had some success with it.  Although, it certainly isn't a cure and it takes a long time to completely work, but it seems to help quite a bit with the pain and in my case it's seemed to actually halt and reverse the progression. (the new sinus track is gone, you can't see anything in the armpit, and the groin is almost completely healed.)  You can also apply it as a paste mixed with baking soda and a little water, which seems to help with lumps that don't break the skin.  Like I said, it's not a cure, but it does seem to help.  I've also been drinking lots of water and green tea, exercising more, trying to reduce stress, and generally trying to eat healthier.  I'm not overweight, so that's not a factor for me. More likely, stress is my trigger.  You might look at the turmeric threads in the "skin complaints" page and on the "Remedies" page.  I'm going to keep using the turmeric hopefully as a preventive, although I'll probably lower the dose once I'm feeling like I'm in good shape.

I went to the head of the derm department at the University of Chicago hospitals last week and he was floored by my story about turmeric, and wanted to know everything about it.  He said to keep at it, and come back only if I flare up again, and gave me an antibiotic wash, and a refill on the topical antibiotic clindamycin, which seems to work ok.  Maybe the researchers at the UofC can figure out why turmeric works.

It seems that everyone is different in their quest for relief, and what works for some doesn't work for all.  So it's good that you've started this thread so that we can all share our hits and misses.  Good luck to you.

Offline OregonGirl

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Re: HS Medication question. What are you on and how did it work?
« Reply #5 on: Friday February 02, 2007, 08:33:05 PM »
Thank you all for your responses. I will go purchase Tumeric at the herbal store here :)