HS is still a new diagnosis to me and my specialist is not give me many answers to my questions. I typically get the responses “there’s no clinical evidence or studies”, “I don’t know, I just go off of what the patients tell me”.
So I have been on minocycline for 3 months and has not done much for me. I’ve had 1 de roofing and another set for April. I have always lived a healthy lifestyle but am working on making changes. I am using resorcinol cream but have no idea what it’s supposed to do… read more
You will hear this often, but there is no single treatment that works for everyone. Because, it’s true. HS is poorly understood and understudied. I believe the root cause for me is hormonal. My derm prescribed Spironolactone 100mg in late November and it has been very effective for me. At the same time I started diet changes and adding supplements (see my story for details). There are studies, albeit small, that support taking Spironolactone (for women), taking large doses of Zinc (30-50mg with 2-4g of copper because Zinc depletes the copper in your body), and Vit D3 as well for HS. I just had an intake at UCSF’s HS specialty clinic and they were very pleased to hear I was already taking Zinc. They have found it to be very effective. Use Google to find these studies. Your specialist may not be up to speed so you may need to take these studies to him/her. Or, see if there is a clinic/research unit specifically for HS near you that you could get in to. They are on top of the research and have immediate feedback on what is/is not working for their patients, and are usually conducting new research themselves that you could be a part of.