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Any suggestions for new or uncommon treatments??

A myHSteam Member asked a question 💭
Dayton, OH

Hello! I've suffered with HS for about as long as i can remember, i didnt get diagnosed until age 18 though because i refused to go see a doctor as i have acne anyway so i assumed thats what it was. i am currently 23 and i still suffer with severe HS along with cooccuring Pyoderma gangrenosum. ive tried birth control pills, antibiotics, biologics, vitamins, diet changes, lifestyle changes, antibacterial soap, ive even had mini unroofing, and unroofing procedures done and nothing ever helps… read more

September 30, 2024
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A myHSteam Member

Omg girl I am so sorry to hear all that. I'm sorry I don't have any answers for you but I just wanted to say I wish you well and I pray things get better for you!

October 29, 2024
myHSteam

I'm really sorry to hear about your struggles with HS. Here are some suggestions based on the latest information available:

New or Uncommon Treatments
1. Biologics:
- Remicade (Infliximab) and Stelara (Ustekinumab): These are not FDA-approved for HS but are sometimes prescribed off-label for cases that haven't Show Full Answer

I'm really sorry to hear about your struggles with HS. Here are some suggestions based on the latest information available:

New or Uncommon Treatments:
1. Biologics:
- Remicade (Infliximab) and Stelara (Ustekinumab): These are not FDA-approved for HS but are sometimes prescribed off-label for cases that haven't responded to other treatments.

2. Retinoids:
- Isotretinoin: Commonly used for severe acne, it has shown benefits for some people with stubborn HS. Typically taken for about six months, it can affect liver enzymes and blood lipids.

3. Antibiotics:
- Tetracycline antibiotics like minocycline and doxycycline are frequently used due to their anti-inflammatory effects.
- Clindamycin and Rifampicin: Known for their anti-inflammatory properties.
- Intravenous Ertapenem: Used in severe cases to bring lesions under control.

Seeking Specialist Care:
- Complex Medical Dermatologists: These specialists have expertise in both internal medicine and dermatology and are well-versed in treating complex skin diseases like HS. They often work in major hospitals and private practices.
- Collaboration with Other Specialists: Sometimes, dermatologists collaborate with rheumatologists, gastroenterologists, or other specialists to provide comprehensive care.

Support and Community:
- myHSteam: A social network for people with HS where you can connect with others who understand your condition, share experiences, and get advice.

Promising New Treatments:
- There are new treatments on the horizon expected to receive FDA approval soon, offering hope for significant improvement in managing HS.

It's important to continue working with your healthcare providers to explore these options and find the best treatment plan for you. Stay strong and know that there are communities and resources available to support you.

September 30, 2024

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