Would like to discuss treatments of HS

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Hi there. I have been newly diagnosed with HS. I've had it about 15 years and my doctor just said it was folloculitis but I was seen by a different doctor and she just diagnosed me. After reading all the stuff on HS that's exactly what I have. I go through months of nothing and then painful flare ups of multiple lesions. Sometimes I can squeeze or lance them on my own and they go away in a day or two. Others just seem to stay for days and weeks. I've previously used fucidin H cream on an occlusion bandaid and cover the lesions. I've recently started benzacin which is benzoyl peroxide and clindamycin topical. Wondering if anyone's had success with this? They're so painful it hurts to walk and sit. Majority of mine are inner thighs and some in my armpits but those are usually quite minor. Thanks.

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  • Posted

    Hi Canada86,

    Defintely using topical ointments seems to help me, especially if they're weeping and often use it before they open also.  Have to keep the bio-load under control I feel.  I use chlorhexidine wash on the areas in the shower and betadine afterwards.  I let my infection spread a little for years and after having surgery learnt how to bandage it properly and contain a little.

    I had a remission after surgery (of a big one) and 10 days of intravenous antibitiotics and then afterwards have been able pretty much nail down the flare ups to what I eat.  (potatoes, paprika (nightshades) and maybe some nuts).

    Also in those areas.... I found the wrong underwear will rub and aggravate...  also armpits...  I found polyester shirts seemed to really exaccerbate it.

    I can't go on about the food intolerances enough...

     

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    • Posted

      The effective antibiotics for me was clyndamicin - very effective after trying many.  Although I've only ever ingested it and haven't found the topical stuff here

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    • Posted

      I can't tolerate oral antibiotics very well so unless it's a last resort I avoid them. That being said the lesions go away soon after starting any oral antibiotics for other conditions but within a week or two after I can get new ones so seems pointless. Yes my underwear lines are pretty much exactly where the lesions and scarring is in my groin. I'm going to try to lay off potatoes for a while and see ( this recent flare up doesn't want to go away and I have been eating potatoes more frequently in the last few weeks). The actual diagnosis is new to me although I've suffered for years. I'm definitely going to look into it the food causality. Thanks. I'll let you know if this benzaclin works.

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  • Posted

    My daughter has hs and the only thing that has helped her it her diet .she had an alergie test and has cut out dairy mainly on a paelo diet this keeps her almost free .hope this helps.
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    • Posted

      Thanks. I've never noticed a difference in relation to diet but when I did lose weight they were better (less chaffing and rubbing). Also I've noticed that if I'm more stressed, working more, sleeping less, they flare up and don't go away as easily (maybe I can get a doctors note for a vacation!). I'm going to follow the advice on here in regard to nightshade foods and try to stop them and see what happens.

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    • Posted

      My daughter had a food alergie and vitamin and minerals deficiency test which showed that she was dairy intolerant and magnesium very low since changing these things she is almost free . But it seems very different for everyone. I think some people only ever have mild problems whilst others have a severe cases. Good luck to you
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  • Posted

    Hi this is common as many doctors have never even heard of HS.  The only way to get a firm diagnosis is to see a dermatologist and get access to the latest treatment.

    The worst thing you can do is 'squeeze' or 'lance' them on your own as you risk causing damage to the lower levels of your skin and also risk spreading the infection.  Don't ab's work for you?  I always take those when I have a flare up but they don't help everybody.  x

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    • Posted

      Abx work but I get violently ill and bed ridden basically so I only use them as a last resort. My question for everyone was if they had used topical abx and which ones. Like I said before fucidin H has worked in the past but I'm trying benzaclin now and wondering if anyone else has.

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  • Posted

    So many doctors have little or no knowlede of this "secret desease" PLEASE do not squeaze the "boils" this can make things worse,cause infections, they have to go down in their own. My daughter has been a sufferer for 20+years, it  was hardly ever heard of then, we saw umpteen doctors who said it was this that or the other, prescribed creams anti biotics, you name it.  All the family can do is be understanding, especially when it is painful.  You need a dermatologist that specialises in HS.

     

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    • Posted

      I've been taking care of the "boils" on my own for 15 plus years and managing just fine. If this current flare up doesn't settle down I might ask to see a dermatologist. If the boils just bleed I leave them alone but if they're full of pus they need to be drained. I'm an RN.

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    • Posted

      My question for everyone was if they had used topical abx and which ones. Like I said before fucidin H has worked in the past but I'm trying benzaclin now and wondering if anyone else has.

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