Hidradenitis suppurativa

[CaptainBeanThief]

Hi 👋
I suffer badly with HS,
I've had many US guided drainages, Ive had a couple removed under GA when I was nearing sepsis ( had sepsis 2x before) I've had more flucloxacllin than id like to imagine and co-amoxivlav even the terrible ones at the bottom of the spine.
Anyhoo Ive had a persistent one since 18 ( I'm now 31) I've seen a breast specialist for it and they just keep ploughing me with antibiotics ( I already carry CDIFF )
I'm prescribed dermol, hibiscrub, and octisen.
It's usually Klebsiella or mrsa infection in the abscesses when they become infected but this is looking quite bad
The breast specialist said around 18 months ago it's a reptured cyst but it's looking necrotic to me 😬?
I had NF in my leg last year and nearly lost it so I'm 100% more paranoid around skin infections.
Pic included of the wound -
My question is - what treatments/ tricks do people use/have
And would people people be worried about this ??

A better picture maybe ?

Hi OP,

sorry to hear what you’ve been through. HS can be so relentless.

I can’t tell from the pics how serious it is, but it looks so bruised and painful. You should defs get to the docs. Having a cyst for 18 months is way too long to go without follow-up.

best of luck

Thank you - I had to take it closely as any further id have my tit in the picture 😬😂
I've had an on/off abscess and infections for over 12 years now this for 18 months, I get them everywhere but it's getting to the point now I'm having to drain the cyst every single day myself because it's filling up, when it's drained the internal sac/case is hanging out 🤢
About 4 months ago I had a horrific abscess on the other breast - I had to have emergency surgery via the abscess pathway under GA cos of the location - they mentioned this one I don't understand why they couldn't take that one out as well.
It's shit really because it never gets better, only worse, it's odd as I've never suffered with facial acne and my skin is pretty good on my face however armpits down it goes downhill - literally 😂

Are you sure you're carrying CDIFF? That's highly contagious and causes diarrhoea.

Have you actually seen a dermatologist who specialises in HS

Yes I was diagnosed with being GDH positive last year after spending 8 weeks in intensive care, they said I carry CDIFF however I didn't have it at the time of the positive GDH test.
I have been formally diagnosed with HS by a dermatologist, I started suffering with blackheads and little boils from around 16 but since my early 20s they have got rapidly worse. I didn't actually get diagnosed until around 3 years ago despite knowing in my own head I probably did have it, it was a long arse wait unfortunately to see a dermatologist and I couldnt afford to see a private dermatologist

I am so sorry that you are dealing with all this. HS is very painful, I have it from teens on my inner thighs. My HS is milder than yours and went into remission when I lost weight (from 120kg to 65kg) by weight loss surgery. 2 decades later my weight shot up to 100kg and I had HS flare up again at that weight though it returned about 70% milder than pre weightloss. I never drained them, I just apply a pad and stick it to my skin and change it frequently. They take about 2 weeks to calm down.
My triggers are stress, heat and friction (weight gain). Usual process is area gets sweaty and itchy, I scratch it and within a day then find a new HS boil. I noticed they came back just before my period so hormones might be a factor. I have never been on hormonal contraceptives. I heard that lancing boils isn't the best practice..there is so much still unknown about HS which is so frustrating.

I've had them when I've been small(er) but granted this is the biggest I've ever been and this have been the worst they've ever been, I don't tend the lance them myself ( I learned the hard way in my early 20s) but this one is so painful and they don't won't do anything it's frustrating me so badly.
It's quite a disgusting condition as well and stigmatized still.

Another fellow HS sufferer here - sorry you're going through it, it's shit.

I stopped going to the doctors for the best part of a decade because I was sick of being given endless antibiotics that didn't work and made me feel like crap.

A couple of years back I was going through a hugely stressful time and stress and lack of sleep makes my HS a million times worse. I ended up with a huge cyst which ruptured and led to sepsis and left a hole about the size of my palm. It was horrific. I ended up in hospital followed by receiving outpatient care for just under a year. The clinic was phenomenal and talked to me about various dressings that helped heal it with minimal scarring. The first type they put on it was a sort of charcoal pouch type dressing? They help to drain the cyst. Then once it's fully drained, they switched to iodine mesh dressings which encourage healing. I ended up investing in some for future bad flare ups on Ebay. Might be worth a look. They are a bit messy so you need some sort of sticky dressing to cover it!

I am not a medical professional so take this with a pinch of salt but I have had cysts that colour that are due to bruising and a build up of blood rather than being necrotic.

I'm now under a different dermatologist who put me on a combo of rifampacin and clyndamycin. They're strong antibiotics and they have their own side effects which aren't great but for the first time in 15 years a 6 month course sent me into temporary remission. It didn't last so now he's trying other medications but I would be pushing for them to follow the path rather than keep on giving you the antibiotics you're getting.

I am finally feeling hopeful after having given up completely for ages and I would really recommend pushing until you find a dermatologist who is invested in helping (when I was re-referred I flat out refused to be referred to the same dermatologist as last time as they were no help and I had some issues with comments they made. I worried it would cause issues but I am so glad I did). Its a miserable condition but there are effective treatments, it's a case of finding one that works for you.

@Cakedoesntjudge
Hi,
I'm mega paranoid about skin infections, last year I was in ICU I ended getting necrotic fascitis from cellulitis via a femoral line, I nearly lost my leg and they could fit an adult sized hand all the way through my leg - sepsis and multi organ failure so I'm fully aware of the dangers of skin infections and I've begged doctors to put me on antibiotics as a form of prolaxsis (sp?) rather than just creams and they just refuse.
It's hard and they just don't seem to care
:-(

Mine go that colour when they're full of blood

Have you ever been swabbed for PVL-staph infection? Some Staph aureus bacteria produce a PVL toxin. The bacteria can cause recurrent infection and in very rare cases overwhelm someone and cause problems such as pneumonia and sepsis.
It would be worth having a swab and asking the GP to discuss your results with the microbiology team at the hospital. The treatment may involve the same regime with Hibiscrub again and also nasal cream, but worth someone pursuing it for you, to see if anything else can be done.

@DrFoxtrot
No, I don't think so, unless I was in ICU and I didn't know, the only 2 bacterias have been noted have been MRSA and Klebsiella pneumoniae
I have also had a few other staph type bacteria but never heard that one.

I have to take the antibiotic Lymecycline every day and that seems to help. I know it's bloody awful and until abcess bursts or gets drained it's unbearably painful 😣

@DrFoxtrot
I used the nose ointment for the MRSA but it never seems to go away, I had it in my first ICU stay in n 2020, and in 2023 and seem to have it in a few of my abscesses when they are tested/drained.

@CaptainBeanThief whereabouts are you country wise? I'm in England and my GP can't prescribe me the meds I'm on. I had to wait for a dermatology referral at the hospital. GPs just kept prescribing me the standard antibiotics if I had a flare up, fully admitting that they didn't really thing they'd help but they didn't have the ability to prescribe the stronger meds I'd need.

Have you discussed your concerns with the doctors you're seeing that it's necrotic? If so, what have they said? It's hard because the last thing you feel like doing when you're feeling low about HS is putting your foot down but I've found you need to find the treatment path you want and then really push to get it.

If you're UK based there's a clinic in London that specialises in HS that you can ask to be referred to. I've not personally been there so can't vouch for it but I know of its existence. If not UK based can you see if there's any specialists nearby to you?

I would ask about trying rifampicin and clyndamycin. The side effects are mostly non problematic. The only issue I had on them stems from the fact they are, in essence, very strong antibiotics, which I don't get on with brilliantly anyway. So I had quite bad headaches for the first couple of weeks that nothing seemed to help but then they went away. My stomach wasn't great for the whole time I took them which is why I wouldn't want to stay on them longer term. If you're one of the people they work for though they can help you stay in remission for 5 years or so. I'm currently trying Dapsone which doesn't seem to be as effective so I'm waiting for my next appointment to see if he wants to try upping the dose first or trying something else.

There is Humira but I'm quite against trying that. It's meant to be very effective for HS but increases the risk of cancer and I'd be too scared.

How is your mental health? I know I get very down if I have a bad flare up so just wanted to check how you were.

Guys and St Thomas' is the place in London with the HS clinic I've mentioned above if that helps anyone!