Is progression inevitable? Can it stay mild?

I have had HS for 13 years the first 8ish years it was back and forth in and out of remission. I had a few highly stressful events take place and at the same time became sensitive to antibiotics. My HS started to develop in new places and I had no way of treating it so I am now stage 3. I dont hear from a lot of people who are not stage 3 but I didn't reach out until it was really bad for me.

newzealand,

I have had HS for 16 years, and have (thankfully) remained in stage 1 the entire time.  I take a low dosage antibiotic, watch what I eat (my triggers are excessive dairy, antioxident berries, and some nightshades), and don't wear anything with spandex or polyester.

I have had a few severe outbreaks, but I am able to get them back under control by following the steps in my first paragraph.

I don't know if once you have HS, you have it forever, or if it subsides as one gets older.  I guess only time will tell.  I guess the answer to your question is yes, I am able to manage and contain.

Hi. Well I'm 27 now and I've had HS for a few years and when my regular doctor didn't know what was going on in my armpits she sent me to a dermatologist. That's where I got diagnosed. At the time my HS was just painful bumps but then turned into holes and have the scarring. I also have a genetic health condition that plays a role in having HS. I'm at stage 2 right now, not sure if I've already reached stage 3 yet or not but my case may not be as bad as others have it but it's still awful. I have not had any surgery to remove anything yet so I guess that's good even though I've reached plenty of points where I would've loved to. I tried the antibiotics thing but so far any that I've tried since I was first diagnosed they didn't do anything for mine. It was like I wasn't even taking anything. So when I get a hole I just keep it covered with a gauze pad and some sensitive skin pain free tape, it seems to me they heal better when covered. If I'm in pain caused by the bumps I take tylenol. I've looked up the disease many times and I've read each time that this disease does have 3 stages that it goes through. I was also told that it can be helped a little to try and keep it under control by my dermatologist but I haven't had to go see her... Although my HS has been a constant battle even before I was diagnosed, I had had HS for almost a year or so before being diagnosed. I've never seen remission and I'm not sure that I will. I think anyone's case could be mild but I think eventually it will go to stage 3. I've also heard that eliminating nightshades from people's diet can help and even help get to remission or at least find what nightshade(s) are possibly triggering the HS. I'm still working on that part myself it's just hard cuz I love pretty much everything on the nightshades list, they play a huge role in my diet. Well good luck and wish you well.

Kia ora, I have had it for about the same length of time as you and I am still instage one. I currently am in remission and drug free (except for curcumin once I feel a flare starting). I am hopefull that I will stay that way !!!! I have read that not everyone progresses and it is important to deal with it in the early stages.

 

Wish I was still in stage 1, mine started around your age under my breasts of all places. One cyst around the time of my period then it would go away, couple of months would go by then it would return around the same spot. Never a huge one and treated like a boil and it worked with a drawing salve at night. Then I hit 30 and the saying that everything go's down hill when you hit 30, well it quite literally did....I then started getting them in my arm pit, centralized to my right side. Again treated it like a boil, but saw the dermapologist and no help, he literally told me to start a benzoyl peroxide wash, and told me to use unscented deodorant. That did not help! About 5 years of on and off cysts and saw a decent primary care doc and she took one look and said you have HS! Finally I said someone can explain why I am getting these, but she had no real outlook or treatment aside from antibiotics and so I was given Doxycycline and just like you it helped me. Fast forward a mild break out here and there and a move to another state and some stressful situations in between and they started on my thighs and bikini region. Now what's weird is I now never get them under my breasts and my right arm pit stopped (with scarring though). However my left arm pit just recently started and now I'm close to 40. I do not have PCOS but I believe that "ingoldsby" advice is on to something. I am D defficient, I live in the north east part of the US and we don't have long stints of sunlight especially in the winter and fall months and I will say that mine seem to be at their worst then and then take weeks to heal in the spring and summer. I personally would take their advice and really get tested for D deficiency and start a Curcimin supplement. I just started personally taking a probiotic to balance out the bacteria levels in my intestines to see if any bad bacteria might be getting into my glands. The apocrine glands are the affected ones typically, and they are where you sweat the most. I think I will also pay more attention to what I eat and start a cleaner way of eating, less dairy and carbs. I do love my pasta and like you nightshades (gotta have a nice sauce to go along with that pasta) but eat it less frequently. During the week at more veggies and proteins and leave the carbs for the weekend and I'll see how I feel. I hope you stay in stage 1, getting them in the groin is the worst. Mine went undiagnosed or miss diagnosed for so many years. Just now even my new doctor just learned of the disease here but unclear on really how to treat it, which is why I resort to this site. I think we can all help eachother understand and give tips and advice that may or may not work but it's worth a shot, considering the antibiotic alternative. I truly believe that far more than 1-4% of the population is effected and maybe they just mean in the US alone when getting that number, because I have talked to other people from around the world that are experiencing the same. I hope more doctors would get better training and maybe understand that maybe even the healthiest of foods might be effecting us in more ways than one and a large part of this disease seems to be effected by our diets. Could also be the pesticides and added hormones we ingest. I just don't have the money to shop at Whole Foods consistently to buy all the organic (or so called organic) stuff and all natural meats.