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Skin, nail and hair health
1

hello eveyone, i've been suffering from hs for almost 25 yrs but i've only recently been diagnosed (2yrs ago). for me it was a relief to know that there is a name for this unbearable disease. i thought right its got a name is there a cure? well i can hope, maybe one day.

my symptoms seem to be getting worse as i'm getting older, i'm 41yrs old, i suffer on a daily basis; washing myself, my clothes, changing dressings.

i get spots around the back of my kneck, across my shoulders, under my arms, all over my chest, on my back, between my buttocks and around my groin area, and they range in size from pea to grape. most burst open and weep with the most foulest stink, others are solid lumps.

ive had various operations over the years, several on my back, chest, kneck, under my arms, pilanidol sinuses x2 (top of buttocks).

i'm currently taking lymacycline and i've had flucloxacilliin, amoxacillin as a quick fix 2 week course antibiotic, i also take ibuprofen. i'm in pain most days and because of this i feel so depressed.

i've never tried any other remmedies because i've never had the opportunity to hear what other sufferers use. doctors don't seem to want to help they don't seem to know enough about this disease.

i would welcome your thoughts on what are the best things to try and whether they are available on prescription or health shops etc.

2

You poor thing!! Ive suffered for 17 years and was diagnosed 5 years ago, my symptons are not as bad as yours, i suffer in the armpits only and also have had many operations. Do you smoke? Are you overweight? These are contributers to the disease....honest! Antibiotics are useless, My name is Rachael if you fancy a chat x

3

i feel for you both, 17, 25 years...i can't even imagine how bad that is.

smoking and being over weight are factors but from what i've read so is poor diet, lots of refined carbs and dairy seem to be a cause and some people have found tumeric helps.

all the best

tom

4

I'm now 30+ year of suffering the joyous condition that is HS. The symptoms have always been there, with little rest bite, but on four occasions the symptoms have got worse........much worse with constant debilitating pain and oozing of blood and pus from all the affected areas. For me, these are the armpits, bottom and gentleman’s vegetables

I'm currently 18 months into a bad flare up. It’s the fourth, and possibly the worst I’ve experienced. Back in the summer, I was barely able to walk and on one occasion on my knees vomiting in pain at work. It was unbearable, so the following day I turned up at my consultant’s surgery, who willingly saw me and asked me to return in a week’s time.

Seven days following, I was put on infliximab. It's administered as an infusion, and takes around 3 hours to do. It does have some side effects, primarily you have no immune system, and are open to catch anything doing the rounds, i.e. common cold, flu etc.

Within 72 hours, the pain was gone, the weeping of blood and pus had stopped, and the cellulitis was fading. Unfortunately this only lasted for four weeks, and slowly but surely I'm sliding back down the slippery slope to the hell that is a bad HS flare up, but my god, those 4 whole pain free weeks were wonderful.

I soon return to see my specialist to assess the treatment, and as I understand the dose and frequency of the inflixomab infusion can be modified.........Fingers crossed that this was not a 'flash in the pan'

The good news (if you can call it that) for a young person who’s recently been diagnosed (It took 27 years for me to be diagnosed) is that at least now your treatment can now begin. You'll be started on the mild treatments which over time get ramped up until you find a treatment that controls the disease. Furthermore, the choice of treatments has now improved but there is still much room for improvement. After 30 years, I’ve still not given up hope that one day I will be normal. Until then, I’ll keep bursting the boils, showering twice a day in hibiscrub, taking paracetamol/codeine tablets to control the pain, and wearing sanitary towels down the back of my trousers to absorb the blood and pus.