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 to everyone. Sorry in the middle of no internet, just checking in quickly to see if someone could PM the name of the Facebook group so I make sure I join the right one. Some useful things to try. I’m already gluten free and low dairy, and I know I react to nghtshades anyway so that’s good to know I need to go further with cutting stuff out.
I use the natural deodorant company deodorant. It’s like a paste. Is that good or bad?

Update: my angriest lump has gone down completely!

Oo that’s great, was it the medication or did you try the honey?
My acne cleared up when I had to stop eating gluten, just not the HS

I think it’s a combo of meds, benzoyl peroxide and low-carbing. Not yet tried the honey.

Interestingly I felt one rumbling under the surface of my thigh about two nights ago and that also seems to have buggered off...!!

How’s everyone doing today?

I’ve ordered turmeric and zinc supplements as I’ve read good things. My war chest is growing!

GROSS PIC ALERT

Well, I think this is looking pretty good after a week’s treatment! (Was diagnosed officially last Friday). No new boils.

I’ve done:

Ketogenic diet with no nightshades
Metformin 500mg once a day
Lymecycline 400mg once a day
Zinc supplement
Turmeric supplement (and drinking lots of turmeric tea)
Washing with Hibiscrub
Applying benzoyl peroxide overnight

That ‘before and after’ is last Friday on the left and just now on the right. Excuse the unshaven pits!

Looking good! Really pleased you’re getting progress

That’s great! I’m currently lying here waiting for the honey to dry. Turns out the 3 tubes I ordered are all single use and you can’t put the top back on so decided to use the lot under my arms and on my chest 😂

Sorry I didn't reply earlier, I'm in spain looking after DM which is a mixed blessing.
I find i suffer less out here, DH is convinced it's the chemicals in the pool but I'm less convinced. Down side is not wanting to wear strappy dresses when out because of the awful scaring and not being able to shave armpits too regularly because it aggravates it.
Would love to know how you get on with the honey. As I said it works for me but if this thread has proved anything it's that what works for one might not for another

If any of you haven't been sent to a skin specialist, please get referred. Most GPs dont have adequate knowledge of HS. I kept getting sent to A and E, one surgeon laughed at my descripyion of HS, he had never heard of it.
Take zinc definitely and I also had a combo of 2 heavy duty anti-biotics that finally got rid of it after 6 months, one of them made your wee and tears a bit red. One was called rifampicim, can't recall the other sorry.

Herbal medicine can be really helpful, but you would need to see a herbalist rather than buying something over the counter, so not a cheap option, but effective.

JonSnow is your HS now in remission?

Yes, it has been for years now thankfully which I didn't think was possible. My lumps were under my armpits and enormous.
It was horrible. Since then I've met one or two people who had it and have successfully managed it but it took a while.
I was quite depressed as I'd googled too much and thought it would never go away.
My abscesses got infected sometimes so I had cellulitus and was scared of getting sepsis. I'm not renowned for my optimism!

That’s fabulous JonSnow, so pleased to hear that!

Googling really is the enemy.

Are you left with much scarring might I ask? I’m really impressed at how my angry red bumps have faded in just over a week of my ‘new normal’!