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Hidradenitis Suppurativa - at my wits end

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rachel052
rachel052

Hi all! I'm currently 26 years old and I suffered from facial acne when I was in my late teens for which I was prescribed Roaccutane which proved successful. Everything then went quiet for a while and I enjoyed having relatively flawless skin.

When I was at the tail end of 22 I started getting boil like lumps under my breasts which would sometimes burst with nasty yellow pus inside. Sometimes I couldn't help but squeeze and would do so until they bled (bad I know!). As a result I have been left with terrible scarring. 

Just before I turned 23 I moved to Dubai for a 2 1/2 year stint where the boils continued to get worse and spread to my inner thighs, down my sides where bra straps go round the body and even sprouted up on my bum cheeks. I attended a Russian dermatologist while in UAE and was told it was because I favoured shaving as hair removal and should consider laser hair removal (funnily enough a service she provided). Other doctors blamed my weight as I am obese but I found this to be an easy answer for them.

When I returned to the UK I went straight to my GP who then referred me onto the local hospitals dermatology unit. I was put on another course of Roaccutane - which I am supposed to still be taking but I stopped as the side effects became unbearable for me with absolutely no improvement. The doctor has confirmed I have Hidradenitis Suppurativa and said when I go back on 29th December he will change me over to a drug called Dapsone which is regularly used to treat leprosy. Has anyone else with this condition taken this drug, if so was it successful? If not what do you take that you find helps? I'm losing the will with doctors at the moment. When I attend on a monthly basis they don't even look at the current state of my body to assess if it's improving or not, they just take my word for it. I also feel I'm doing a lot of research into conditions and treatments myself whereas they suggest nothing.

Any advice would be of help and sorry this is quite a long one!

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  • GAMEOFTHRONES
    GAMEOFTHRONES rachel052

    Posted

    I found Turmeric (the herb/root) helps loads. You can buy it from Holland & Barrett. It is used in cooking but had medicinal properties (anti bacterial.) Worth trying it seriously worked for me when I got HS lumps under my armpits and tried loads of antibiotics and washes but they did nothing.
    • tom85153
      tom85153 GAMEOFTHRONES

      Posted

      Cheers, yeah i have tryed it a couple of times but i didnt see results short term so stopped but will try again. how long was it until you saw a reduction in symptoms? also, do you use it topically or ingested? 
    • GAMEOFTHRONES
      GAMEOFTHRONES tom85153

      Posted

      Have taken it now for ages in a pill form not sure how long it took to work for me but it did work.
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