Anyone with experience of hidradenitis suppurativa and what helps flare-ups

[Skyrmion]

Hi, anyone who has experience with this condition? I have had it for many years now, the abscesses are starting to break my heart - they can get up to plum / tennis ball size, and it's so bloody painful until they burst.

I was told with menopause it gets better, but so far I can't confirm this, struggling with one again right now.

Flucloxacillin does help, but it totally wrecks my stomach and triggers my SVT, I am not taking it ever again - is there anything else which helps you?

Manuka honey is somewhat ok, but anything else I have tried, from Iodine to Savlon is completely useless.

Thank you.

(Edited for typo)

I am sorry that I can’t give any ideas as I used antibacterial soap, hibiscrub, low dose antibiotics and I ended up having surgery to remove the 4 worst cysts. I had it done privately and I think the waiting list for surgery on the nhs was about a year, so if you aren’t on it, I would recommend you ask to be referred to dermatology or for surgery now to get the ball rolling. From the bills I saw it was about £1000 to have the surgery through the Spire hospital.
the areas removed haven’t come back but I did get some other areas of flare up, I have been on a GLP1 for the last year and it had all but gone, have had a couple of spots on my labia since reducing my dose for maintenance. I think the reduction may have been to do with the medication reducing inflammation maybe?

My DC has just been diagnosed. Have you seen a dermatologist? They are currently using topical antibiotics and hibiscrub

I hope yours gets better. Sounds miserable

Thanks a lot, @Calypsocuckoo and @Bufftailed

I had surgery twice before, many years ago, and those two areas are fine since. Might have to go down this route again. I am in Ireland, not sure if the HSE would cover this, but I will find out.

Anyone who has good experiences with creams/ointments ect. for once the abscess has opened?

Thanks again!

I'm on Lymecycline which keeps mine at bay, when I remember to take it! I also have Dalascin T to apply. I really feel for you having abscesses that size, mine are usually around pea sized and that's bad enough.