Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
Hi everyone. I thought I would share the advice I have recently been following from my dermatologist in the spirit of adding to the knowledge bank we've got going on here. HS is such a frustrating illness, and so many of us are looking for any information we can get our hands on. I also see a lot of kooky info out there, even on this forum ('drink this oil!') that I thought advice from an actual doctor might be helpful. Take it or leave it :)
As background, I saw a new dermatologist a couple of weeks ago. I was impressed with this doctor because he mentioned HS without my having to bring it up and said he had several other patients who had it. I was somewhat surprised to hear him say he thought it looked like I had a bacterial infection, or only mild HS with a secondary bacterial infection instead of full-blown HS, even though I am covered with sores. So take my response to this treatment with that in mind. Apparently this is the same protocol he uses for HS, and according to him, "there's no cure for HS, but he sees about a 60-70% reduction in flares in his patients using this method."
The treatment plan has multiple parts.
1. Use good everyday "HS hygiene," which I think we're all already doing. This includes things like wearing cotton underwear, changing your towels frequently, staying dry in summer, and drying off completely after a shower.
2. Low dose antibiotics every day and Diflucan for any skin yeast infections as needed.
3. Use of a daily barrier method in the area called 'Gloves In A Bottle." When he first mentioned barrier method, I rolled my eyes. I have used zinc oxide and anti-chafing ones before and they always end up clogging my pores and making things way worse. This is different, he said. It's not a physical barrier, it chemically bonds with the top layer of skin to strengthen it and make it waterproof. The GiaB has three purposes: It keeps sweat and moisture off the skin and from gunking up the pores and sweat glands; in areas where skin rubs (which let me be honest is where I get all my HS symptoms, I'm fat) it protects the skin and keeps the friction from causing tiny breaks in the skin which can get infected; and if a sore does open up and drain it keeps the fluid off the surrounding skin.
4. For one week, soak the area in Hibiclens in the shower daily. It needs to be in contact with the skin for at least 10 minutes, so it might be easier to apply it with a warm wet washcloth before getting into the shower.
5. For the second week, apply plain yogurt to the area in the shower daily. The idea is to kill everything off with the Hibclens, then repopulate the skin with healthy bacteria. It can be any kind of yogurt, cheap is fine, just make sure it's plain without added sugar or fruit or you'll get an infection. Just rub it on in the shower, leave it for a few minutes, then rinse with warm water, no soap.
This routine (Hibiclens week followed by yogurt week) can be repeated in the future any time you feel it is needed.
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So I'm now near the end of my second / 'yogurt' week, and I thought I'd tell you how it went for me. We all know HS is different for everyone. My trigger is definitely hormonal: all my life I've gotten flares with every period, but foods don't seem to be a problem for me.
So about 3 or 4 days into this, using Hibiclens and GiaB, I felt awful. I loved the way that the Gloves in a Bottle felt on my skin, and it made my skin feel and look much better overall, but I was really seeing a huge increase in active lesions. I thought it was due to the barrier cream, so I stopped using Gloves in a Bottle and continued with the Hibiclens for another week (I forgot to pick up yogurt.)
Using just Hibiclens my skin turned *awful.* I mean so, so bad. The worst it has ever been in my life. I usually have 1-2 active (inflamed, draining) lesions at any given time, by the end of the Hibiclens week I had eight! My skin also took on this sticky, sickly texture and began to kind of break down in places. I didn't want to put yogurt on all the open spots but decided to see the whole process through just so I could go back to the doctor and tell him what a farce this was.
So I started the yogurt 4 days ago... And my skin looks and feels AMAZING. All of my lesions healed up within about 2 days. All of them. I literally do not have a single open sore right now, for the first time since I was a teenager! My skin feels smooth and dry all day long, not sticky or tacky or weepy like it did with the Hibiclens. I keep touching it (I know, bad) and looking at it in the mirror because I'm seriously so surprised this worked.
Maybe it's just part of the cycle. Maybe my body had to get everything out before it could heal and settle down. Maybe I just had a really bad flare. I have no idea. But right now, this is working for me. If anyone else wants to try it, other than the low-dose antibiotics it's all stuff you can buy over the counter.
As background, I saw a new dermatologist a couple of weeks ago. I was impressed with this doctor because he mentioned HS without my having to bring it up and said he had several other patients who had it. I was somewhat surprised to hear him say he thought it looked like I had a bacterial infection, or only mild HS with a secondary bacterial infection instead of full-blown HS, even though I am covered with sores. So take my response to this treatment with that in mind. Apparently this is the same protocol he uses for HS, and according to him, "there's no cure for HS, but he sees about a 60-70% reduction in flares in his patients using this method."
The treatment plan has multiple parts.
1. Use good everyday "HS hygiene," which I think we're all already doing. This includes things like wearing cotton underwear, changing your towels frequently, staying dry in summer, and drying off completely after a shower.
2. Low dose antibiotics every day and Diflucan for any skin yeast infections as needed.
3. Use of a daily barrier method in the area called 'Gloves In A Bottle." When he first mentioned barrier method, I rolled my eyes. I have used zinc oxide and anti-chafing ones before and they always end up clogging my pores and making things way worse. This is different, he said. It's not a physical barrier, it chemically bonds with the top layer of skin to strengthen it and make it waterproof. The GiaB has three purposes: It keeps sweat and moisture off the skin and from gunking up the pores and sweat glands; in areas where skin rubs (which let me be honest is where I get all my HS symptoms, I'm fat) it protects the skin and keeps the friction from causing tiny breaks in the skin which can get infected; and if a sore does open up and drain it keeps the fluid off the surrounding skin.
4. For one week, soak the area in Hibiclens in the shower daily. It needs to be in contact with the skin for at least 10 minutes, so it might be easier to apply it with a warm wet washcloth before getting into the shower.
5. For the second week, apply plain yogurt to the area in the shower daily. The idea is to kill everything off with the Hibclens, then repopulate the skin with healthy bacteria. It can be any kind of yogurt, cheap is fine, just make sure it's plain without added sugar or fruit or you'll get an infection. Just rub it on in the shower, leave it for a few minutes, then rinse with warm water, no soap.
This routine (Hibiclens week followed by yogurt week) can be repeated in the future any time you feel it is needed.
-------------
So I'm now near the end of my second / 'yogurt' week, and I thought I'd tell you how it went for me. We all know HS is different for everyone. My trigger is definitely hormonal: all my life I've gotten flares with every period, but foods don't seem to be a problem for me.
So about 3 or 4 days into this, using Hibiclens and GiaB, I felt awful. I loved the way that the Gloves in a Bottle felt on my skin, and it made my skin feel and look much better overall, but I was really seeing a huge increase in active lesions. I thought it was due to the barrier cream, so I stopped using Gloves in a Bottle and continued with the Hibiclens for another week (I forgot to pick up yogurt.)
Using just Hibiclens my skin turned *awful.* I mean so, so bad. The worst it has ever been in my life. I usually have 1-2 active (inflamed, draining) lesions at any given time, by the end of the Hibiclens week I had eight! My skin also took on this sticky, sickly texture and began to kind of break down in places. I didn't want to put yogurt on all the open spots but decided to see the whole process through just so I could go back to the doctor and tell him what a farce this was.
So I started the yogurt 4 days ago... And my skin looks and feels AMAZING. All of my lesions healed up within about 2 days. All of them. I literally do not have a single open sore right now, for the first time since I was a teenager! My skin feels smooth and dry all day long, not sticky or tacky or weepy like it did with the Hibiclens. I keep touching it (I know, bad) and looking at it in the mirror because I'm seriously so surprised this worked.
Maybe it's just part of the cycle. Maybe my body had to get everything out before it could heal and settle down. Maybe I just had a really bad flare. I have no idea. But right now, this is working for me. If anyone else wants to try it, other than the low-dose antibiotics it's all stuff you can buy over the counter.
If it does, it sure would be an easy and relatively cheap option. And even if it doesn't totally cure it, but gets to that "60-70% reduction" he mentioned, I'll take that.
If my lesions stay healed I'm going to try the Gloves in Bottle again and see how I do with it now that I'm not using the Hibiclens any more. Fingers crossed!