Anyone else with hidradenitis suppurativa (HS)?

ochoseis

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Vulnerable post incoming...

I have a lot of the things. PCOS, T2D, HS. My whole life has been a careful balancing act of blood sugar & diet.

Over the years, I've tried (and succeeded mostly!) various things for the one that caused the most pain, hidradenitis suppurativa. I've only ever had one lanced in 33yrs so I'll take it, but my god.

Metformin at 1500mg did nothing (not that I expected it to. I didn't even know what HS was back then, was too embarrassed to bring it up.)

Quit smoking, less flares.

Lost weight with keto (which in turn had my glucose very well controlled) and went probably 3 years without any flares and started babying the scars. Have had a lot of improvement using glycolic acid daily to the point where my right armpit could pass as a normal one lol. Lefty was always the worst of them but making progress there, too.

Of course I fell off the keto wagon, gained a lot of weight back, but never reintroduced the foods that really caused me the most issues (eating pasta, pizza or ice cream was almost a guarantee of waking up with a golfball sized boil in a day or two.) Keto did teach me a lot of great habits with food and there's loads of things I still don't eat or choose to take off my food because it's not a favorite anymore.

Since starting tirzepatide, I still do eat fairly low carb. My A1C has stayed in normal range. Last fasting blood sugar was 89. I am completely regular as far as periods go despite no longer being on birth control (long story.)

I realize I'm super fortunate with this that it hasn't gotten worse or been worse, but just wanted to put this out there and see if anyone had experience with it and what helped/didn't work.

I am still pretty "flare free" since starting tirzepatide in December. I had one pop up in March around the time my period hit, I had a nasty cold, and was also under insane stress at my job. I did notice it went away fairly quickly without any intervention on my part, and now you can't tell it was ever even there. The pain was also a lot less despite the size and location of it.
 
I’m on Reta and and KLOW and hoping that as I continue to lose weight, the HS flares go away. I have one that has just been relentless and keeps reopening. Very painful. Anyway your post gives me hope!!! Thank you
 
I’m on Tirz, cutting sugar and eating clean helps me a lot. Any time I am really strict on what I am eating I notice less flares. I’m also looking at trying KPV to help with inflammation.
 

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