Hidradenitis Suppuritiva - Anything that works?

[TreeSunset]

Have hidradenitis, was okay but now getting huge abscesses that just refill after a few weeks. Washing with chlorhexidine and dressing abscesses with inadine when they rupture. Going to try Zinc. Thinking about seeing a private dermatologist. Anything that anyone’s tried that works? Any natural deodorants that kill bacteria, don’t mind about the lack of antiperspirant. Or should I be using a hard core antiperspirant?

Or any websites or groups that will help?

Hi Tree - what a coincidence I’ve found your thread as I’ve just come back from the hospital having finally been diagnosed by a dermatologist after suffering (albeit quite mildly) for two years.

She advocates insulin control - a steady low carb diet and has also prescribed me three months of low dosage metformin.

I also have PCOS which is a common thing to have alongside HS. The hormones impact the sebaceous glands, from what I understand.

I am a few stone overweight (another typical sign) and so plan to try and get the disease into remission through lifestyle changes.

How long have you been suffering for?

Hi Thierry, I also have PCOS. I’ve had it for a decade, but the HS has gone into overdrive the last 6 months. My weight is also creeping up and I know I could lose a few stone. I used to take metformin about 10 years ago, maybe I should reconsider. But I could be a lot better with my diet and low GI.
I’m trying to research into natural supplements that help with the hormones balance but it’s hard to know what works and what’s snake oil.

Hello, so pleased I found this!
I've had HS for years but only recently diagnosed. Been prescribed Lymecycline to keep in low stages.
Have either of you taken anti biotics long term?
Otherwise, I use Vicks on any unbroken ones coming up, before they need dressing sometimand on the odd occasion they are all low I use a gentle alcohol gel and that seems to help.
But what works for one doesn't always work for another.
It's awful isn't it?

Hi checkoutchick!

It's good to hear from others - obviously I wish none of us had to suffer this dreadful affliction but it is comforting to know that we aren't alone.

I'm taking lymecycline on an initial three-month course (I have a follow up booked with dermatologist in September, so she may extend if they're working). Having read lots around HS, many posit the theory that HS is - in some cases if not many - attributed to a leaky gut, so I can't say I'm delighted about being on antibiotics long term, but equally I'm aware we're in summer now and expecting a heatwave and quite frankly there's not much I wouldn't do to stave off more flare ups and scarring!

I've heard a few people mention Vicks - will pick some up when next at shops. At the moment, my "routine" is:

• Metformin & lymecycline tablets
• Wash with Hibiscrub in shower (I also wash the unaffected sites with it - left armpit, left thigh, lower groin - I am really terrified of it popping up in new sites)
• Apply nappy cream to unaffected sites to keep dry and stop friction
• Apply benzoyl peroxide to affected sites (right armpit, right thigh, pubic mound)
• Shave and use Lumea IPL on affected sites

I am also on a ketogenic diet and incorporating intermittent fasting, aiming to lose 60lbs.

checkout do you have PCOS by any chance? What do you think brought your HS on?

Tree how are you getting on? Weight loss seems to be the most reliable way of getting HS at least under control, if not into remission. I'm on the journey myself so happy to be your 'buddy' if you want to join me. No pressure, I understand how demoralising this awful disease is, but I'm here if you need me.

In terms of the natural supplements path - I hear turmeric is excellent, both topically and ingested (I'm going to get some supplements and some herbal teas). Did the metformin help when you took it? There's an increasing body of research suggesting it is excellent at treating many skin disorders (including eczema and psoriasis), so maybe it's worth a chat with your GP?

ThierryEnnui Me too!
Starting taking them on the 10th June. Have you had a side effects at all?
I dont have pcos but suspect I have something else. Was having investigations with the gp for an autoimmune type condition but he then was just fobbing me off. Had no idea it could be linked to HS as I didnt know it was a thing! I thought it was just something weird that my body did!
I've had it since a teenager I suspect, as I seemed prone to boils but one every now and then.
The last year or so they've been more prolific and problematic.
My gp just kept sending me for blood tests and finally in March, he shrugged his shoulders at me and asked what I suggested next?
I broke down and I think in an effort to get rid of me said, well I could refer you to a dermatologist...
That appointment was the beginning of this month. She was lovely, and said yes this is what it is, it's not your 'bad hygiene ' here's what we do.
I get it on the top of my thighs but its starting in my armpits now.
Where are your problem areas?
Cant tell you how pleased I am to talk to people that know about it!!!

TreeSunset there is a support group on Facebook, and they are all lovely. Lots of opportunities to share tips and tricks

checkoutchick I’ve only had mild side effects – a slight tummy ache on day 2 but I seem to be okay now. I love the NHS and GPs but I was misdiagnosed for two years with HS – my first symptoms started in early 2017 so it has taken over 2 years to get a proper diagnosis (through private healthcare offered via my employer). Luckily I saw a great dermatologist who said ‘yup, that’s HS’ as soon as I’d whipped my top off!

Interesting that you think you may have had it since you were a teen. Looking back I’ve been prone to boils too, so maybe it’s been longer for me – I had a pilonidal sinus aged 17 which is closely linked to HS too. Thankfully that hasn’t since recurred.

I also get mine at the top of my thigh (only the right thigh weirdly) and actually the ones there don’t tend to reach the surface, they stay as sore lumps and then seem to go down, but I do have some blotches indicating scars. Not all that noticeable. I can share photos if needs be! My major problem area is my right armpit. I’ve no idea why my left is totally clear, but I’m not complaining. I think I have mild stage 1 or 2 HS as – thankfully – they are not huge, and not overly painful, certainly not at the point where they impact my mobility or anything and they don’t ever drain furiously. But they are very raised and very purple and I have lots of scarring in that armpit. My final problem area is the pubic mound, probably compounded by a number of ingrown hairs, and I have blotchy scars there too.

My plan of action is either to stop the disease progressing or to reverse it. I know I will be left with scarring, as they are already there, but I can live with it as it is. I just really don’t want it to get any worse.

Hope you don’t mind the personal question, but are you overweight? I think my being overweight + PCOS + smoking for over ten years is what triggered mine. I stopped smoking in March and am bringing my weight down to form the ‘lifestyle change’ part of treatment. So I feel like I’m attacking this from all angles and keeping my fingers firmly crossed!

Wow!
Very similar. I am overweight and did smoke heavily for a number of a number of years. Stopped 5 years ago.
My dermatologist did weigh me and said that in patients that lose weight the condition is improved. She said it'll never be fully cured but managed hopefully.
I'm stage 1 and medication is to stop it getting worse.
I have lots of scars on my legs, purple marks and sore bumps.
Sometimes they come to a point and then drain but not always, just so painful.
I'm pretty sure mine worsening after having a baby...

Really does sound like we’re in the same position! And even with the severity of the condition. Great to have someone to chat to!

Congrats on the birth of your baby! I believe post-partum it can flare due to the hormonal changes. How did you find it throughout pregnancy?

I’m single and childless (I’m 27). Being single actually makes the psychological element of this disease quite hard to deal with sometimes. Though I’d be okay with the lights off

My dermatologist was keen for me to go on the combined pill and browsing the net lots of women have said it almost cured them. My issue is that I did take it when I was about 16-17 and it really worsened my mental health quite considerably. But, I was in the midst of exams and generally quite unsettled at that time in my life, so I don’t know that I’d feel the same again. Perhaps I will give it a go if the lymecycline and metformin hasn’t helped in 3 months time.

I’m interested (for want of a better word) at the legs being affected. Now I’m thinking that the red blotches that I thought were ingrowns might actually be HS scars?!

Thanks, should add my baby is 4 on Thursday 🤣🤣
I'm 35, and actually when it first started I was told it was probably just an ingrown hair..... so very possibly.
Where are you? I'm on the South Coast

I'm in Hertfordshire! GPs useless on the condition (I tried a few - and they even fobbed me off saying it was folliculitis when I told them I was 99% sure it was HS from having done my own research).

Glad now to be in the hands of a proper derma. How's your medical care been?

I've been suffering with HS for over twenty years now and have endured so many operations I've lost count.
I've finally found what works for me. It may sound strange but I use honey! I either mix with boiling water and soak dressings or even kitchen roll and apply. More recently during a prolonged episode I've been applying manuka honey directly (armpits are my nemesis) and it truly has been a miracle.
Don't get put off by the idea of it being sticky, it actually dries very quickly and forms a natural barrier.
I'm now symptom free for the first time this year.
I happen to mention it to my friends who's a Dr. She says they actually prescribe honey infused dressings so there must be something in it!
Anyway it's working fantastically for me (at the moment). First time this year I can actually lift my arm over my head

And can I say how wonderful it is to talk to other sufferers. Generally I suffer in silence as too embarrassed to tell many people about it. It affects everything I do, especially during a prolonged flair up.
Luckily I have a hugely supportive and patient family but it is really a very demoralising condition to live with

Hello drivinmecrazy - thank you for joining us! It's SO relieving to know I'm not alone, truly!

I'm so sorry you've been through so many surgeries with this horrific condition. Are you a stage III sufferer? Have the operations ever helped?

Would you mind sharing a little bit about how your disease has progressed, if at all? I feel a bit as though I don't know what to expect!

I will absolutely try manuka honey. Do you slather this on every day? I'm willing to try practically anything to stop this in its tracks!

Do not use deodorant at all, and look at your diet join the fb group for diet, my dh is on there.
improved when stopped dairy, nightshades, gluten, doesn't leave much but he's healthier.
he started stage one in his 20'd he's now in 50's and stage 3.

I’m so nervous to cut out dairy. I’m a pescatarian and ketogenic so it would limit my diet to essentially fish and green veg.

From what I understand it can be different dietary triggers in different patients so I think eliminating dairy will be on my list - with the contraceptive pill - to try further down the line.

I’m sorry your husband suffers Romany, I hear it can be more severe and unpleasant for men although it affects less of them.

Keep as much stress out of your life as you can, wear cotton not nylon, especially underwear.
ab's don't work and are a complete waste of time.
don't use heat to draw, will spread bacteria.
Draw with a poultice of Kaolin, you can buy online, usually large tubs for horses. First sign use tea tree oil neat and it may stop it developing.
If tunnelling keep it clean as much as you can, it is likely to develop as the years go on. Sorry to be so blunt supported dh for 30 years now.

Also, just in my own experience, deodorant is okay for me - I have a totally clear left armpit and it doesn’t worsen the lesions on my right. I use Mitchum. I’m not sure my colleagues would appreciate me going free of anti perspirant!

Oh, turmeric black pepper and coconut oil in hot water.
Absolutely disgusting i tried it once, but one of the things dh takes.
Will ask him for any specifics he's not told me yet and will post.
However, all of you look at the fb pages, lots of people on there and such good support.
If you ask for a man whose wife is on mumsnet I will tell him there may be some joining and he'll share what he can. Obviously, people will be different, but some things are the same for everyone.
It's not nice getting them on your bollocks, or in anus, sorry if tmi.
My sympathies are with you all, it can be horrendous.
Also point your oh's to the sites too as they should learn what you are going through

You can use lime as a natural deodorant, it works well. A bugger to carry around but we'd put slices in a sandwich bag to keep them moist and then he could use them on the road or at work during the day.

I had it moderately badly in my groin, and tbh was in a bit of a panic about it having read Dr Google too much.

I tried the stuff you mention, and then had six sessions of laser hair removal as I’d heard it might help, and it very much did, it reduced to nothing and fingers crossed hasn’t come back.

That’s really reassuring Space! Do you remember which type of laser treatment it was you had?

So pleased it has gone into remission for you

I think it was Nd:YAG. I got it done at the one of the Harley Medical Group places, so it was “professional” strength IYSWIM.

to all of you struggling with this. It can be a horrible thing to deal with.

I did also lose some weight soon after, who knows if that helped it stay in remission, although it’s crept back on again recently.