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A myHSteam Member asked a question 💭
Louisville, KY

Hi all, I am new here and wanted to get opinions from people taking Doxycycline Hyclate 100mg daily for long term control of your HS. I am concerned about the long term use of it on my gut and all that it does & destroys within the stomach and elsewhere in the body. I was taking it daily for 6 months and it kept my flares to maybe 1 or 2 during that time. I stopped taking it about 4 or 5 months ago and all was good with HS flares. Now in the last 3 weeks or so I have had 2 flares so far.

Also… read more

January 3, 2024 (edited)
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Answer Summary

Members shared mixed experiences with Doxycycline for HS, with some finding it ineffective even after months of use, while others noted... Read more

Members shared mixed experiences with Doxycycline for HS, with some finding it ineffective even after months of use, while others noted minimal relief but concerns about long-term gut health and skin darkening. Several members recommended Cosentyx as a more effective alternative, with one member reporting significant improvement, while others cautioned against long-term steroid use like Prednisone due to potential weight gain, facial changes, and dependency issues. A recurring theme was frustration with doctors treating HS patients as guinea pigs due to limited knowledge about the condition, though one member found remission through a strict keto diet eliminating sugar and carbs, and most agreed to use Hibiclens only on affected areas to avoid killing good bacteria.

A myHSteam Member

Hi, Buddy! Been on Doxy 100 mg for about a year for Rosacea and the PA said that this would help with the HS. Haven’t seen any kind of relief - it’s still there. I’m thinking of looking for a new Doc to be honest! Stay well!

January 4, 2024
A myHSteam Member

Key2 I would be careful taking prednisone......from what I know, prednisone is one of those drugs you can't get off of.....I have a friend that has been on it for years and was having health issues......they tried to get him off it, and he was having issues with his heart......not sure if it was from the drug or not, but they couldn't get him off it......meantime it has changed his looks.....he used to be a good looking guy, and now has lumps and bumps on his face.....not sure about the rest of his body. He's gained a pile of weight.....that has come over year....starting when he started the prednisone. I would completely avoid it! I haven't heard anyone else taking it for HS, so I think your Dr is trying to help without knowing whether it will help.....too many Dr's are like that with HS......they don't know, but they try! We are all at one time guinea pigs!!

January 14, 2024
A myHSteam Member

Hi Mary, Do you use Hibiclens on whole body or just where you have HS?

January 8, 2024
A myHSteam Member

Doxy was not good for me I always had stomach issues with it so I just take consentyx so far it has helped a lot

January 4, 2024
A myHSteam Member

Bill, I took doxy for 5 months because I was having a knee replacement and it was as if I was taking nothing. I was infected when I had my knee surgery and didn't say a word to the surgeon, my knee was so bad and I had dealt with a bad knee for about 30 yrs. My knee is fine.....my HS was not!

February 13, 2024

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