The Lack of knowledge is scary.

[LadyJoro]

I’m rather concerned by the lack of knowledge being passed onto patients of HS, the cause of HS is known so why are people still left asking the Internet or treating the symptoms instead of the disease?

HS is not a hormone disfunction taking the pill will not make it go away although it may stabilise your hormones which can reduce fluctuations in symptoms,

HS is not caused by being unclean washing in hibiscrub will not make it go away although it can reduce the infection risk of open lesions.

HS is not caused by an infection antibiotics will not make it go away although may be needed if a lesion becomes infected

HS is caused by an over active immune response, by having too much Tuber necrosis factor alpha (tnf-a) a signalling protein which in healthy people is involved in the bodies acute inflammation response, ie after an injury. The only way to treat the disease is to bind the tnf-a with a treatment like humira

[Epmcc]

I have been a sufferer of HS for a number of years, and was put on humira since October. It has brought about some improvements in the condition, for e.g reduced swelling and weeping. However the side effects includes very dry irritable skin, thinning hair, mood swings and confusion. Do you know if anyone has used this medication long term with success? Is there any alternatives to using humira as the side effects are nearly as bad the HS, and I am in a dilemma what to do.

[LadyJoro in reply to Epmcc]

Been on it 3 years, no lesions for 9 months of each of those years and only the odd new one in Autumn and these are all reoccurring once’s.

I used to be bedridden for several weeks as the autumn chill hit and everywhere turned the heating back on.

Humira is a brand name, The drug names is Adalimumab, there is another called Infliximab but that is given as an IV so not widely used cos humira is self administered.

My skin has got more dry and sensitive, I use a sensitive in shower moisturiser and hemp hand and foot protsector, does the trick. I found switching to non bio laundry detergent and sensitive softener helped to.

[Igurl]

I’ve had HS since 14 years old. Was put on Birth control a little over a year ago and haven’t had a single outbreak since. They haven’t been able to pinpoint an exact cause of HS. BC and Humira has been proven to be effective in some patients🤷🏽‍♀️.... so personally I’d encourage everyone to try treatments from least invasive (gluten diet, vegan diet, exercise, hibiclens, steroid creams) to most invasive (ie surgery). Honestly it’s whatever works FOR YOU. Gluten diet didn’t work for me neither did antibiotics and steroid creams, hibiclens, or antibacterial soaps. What did work for me was 100% birth control. It completely took away or “reduced” my outbreaks.

[LadyJoro in reply to Igurl]

They have pinpointed the cause of HS, if they hadn’t proven it was excess tnf they wouldn’t have been able to fund the humira on the nhs for treatment of it

[Igurl in reply to LadyJoro]

“An exact cause”. Just like heart disease has several different origin factors (poor diet, congenital heart defects, genetics, smoking) there isn’t one single definitive point of origin. It’s the same with HS; they haven’t found an exact cause to cure or prevent someone from developing it. Which is why low dose birth control works for me (clearly mine is hormone related as it started at puberty), and yours cleared up with Humira. Which is why it’s so important for people to try least invasive methods prior to more invasive.... and to try these least invasive methods they need to know about them. I didn’t need surgery (which would be extremely expensive and cause other potential complications) or Humira (which comes with a host of negative side effects).

[Newbie1987]

Hi how do you know this info? I've been a hs sufferer for 13years being diagnosed with no info apart from its not curable and I will have untill hormone change late 40s

[Jessicaelizabeth]

Yes I was told this as well. Only thing I know about HS is that is from a blocked follicle started after grtting waded atba nasty nail salon. And that it’s not curable can take months or years for it to even heal and that it will never ever go away. That’s about it for any info I got from my doctor. I’ve gotten for information about my condition on tho website from you guys then I had since diagnosed over a year ago.