Connect with others who understand.

sign up log in
About myHSteam

Hidradenitis suppurativa

Questions + Answers

Don't see your question? ask question
Real members of myHSteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
View:

Anyone On Humira For Long Time Periods?

Anyone On Humira For Long Time Periods?

I HATE BOILS!! My armpits stay infected. The odor makes me want to stay hidden from society. I was on Humira for only a few short months. Got a bad viral infection in my throat stopped humira for a week or two and I got better. My Dr informed me the common cold could be pneumonia for me. I want to know how life has been since others have tried humira.

A myHSteam Member said:

I’ve been on Humira for about a little over a year now and about 5 months ago I started to get a really bad rash all over my body and turns out that the… read more

posted 13 days ago

Anyone Try Anakinra For HS?

Anyone Try Anakinra For HS?

While searching the web for info for my son, I came across some info on a fairly new treatment using a drug called Anakinra. Anyone try this?

A myHSteam Member said:

HS is a battle that for sure is different for everyone but equally as consuming when it comes to how much attention has to be given to this condition to… read more

posted 14 days ago

Accutane

Accutane

Hello, new to this site but have had HS since I was 21. I’m 63 now..anyway a friend mentioned she had taken Accutane and had good luck with it. I read all the side effects and am not too excited to take it but was wondering if anyone here has used it and what kind of results you had.
Thank you!

A myHSteam Member said:

Thanks Shari! I have a friend who is giving it to her teen daughter for acne and she is having a lot of side effects also. I certainly don't need any… read more

posted 13 days ago

Has Any Had A BBL Done That Had HS?

Has Any Had A BBL Done That Had HS?

I’m having surgery 12/17 to fix what my HS surgery messed up. Has anyone else gotten cosmetic surgery?

A myHSteam Member said:

(Email address can only be seen by the question and answer creators)

posted 15 days ago

Looking For A Good Physician In The Philadelphia, PA Area That Deals With Lymphedema As A Result Of Late Stage HS.

Looking For A Good Physician In The Philadelphia, PA Area That Deals With Lymphedema As A Result Of Late Stage HS.

I have been battling with severe lymphedema for months now and feel like I'm getting the run around with physicians in my area. I was hospitalized for 5 days and had surgery which I thought would reduce the swelling, but I'm no better off now than I was in June when I went in the hospital. I've been out of work since, and I'm waiting on a MRL test to see why my lymphatic system isn't draining… read more

A myHSteam Member said:

I saw two plastic surgeons and now I'm scheduled for a MRL exam which explores the lymphatic system and then the physician will do a bypass surgery to… read more

posted 6 days ago

Legal Support For Misdiagnosis

Legal Support For Misdiagnosis

Hi — in January 2020 I had surgery to remove a cyst from my breast by breast surgery team. However, I kept getting the growths in the same spot for the months following the procedure, and it even grew in the other breast and was even more painful. I found out in August 2020 from a dermatologist that I have HS. Has anyone ever experienced a misdiagnosis that led to surgery?? If so, have you sought out legal action? Since seeing the dermatologist and getting on a doxycycline pill and… read more

Has Anyone Had Skin Gritting Done To Help There Hs

Has Anyone Had Skin Gritting Done To Help There Hs

I’m scared my doctors want me to have the surgery because how long I’ve been dealing with my skin I’m 24 now started around 4th grade what do you guys think also I have a 1 year old and if I do it will be next year because of the holidays this year and my sons Bug 2nd is in November so I don’t wanna miss anything so let give me your opinion?

A myHSteam Member said:

Yes it’s a chance they can come back but very unlikely in my case

posted 24 days ago

Has Anyone Had A Genital Abscess Drained While On Your Period?

Has Anyone Had A Genital Abscess Drained While On Your Period?

Sorry this is really embarrassing for me I have a really large and painful abscess near the opening of my vagina thats swollen to the point where its almost on the inside of my vagina sorry rather graphic I know but im at my wits end can barely wipe without screaming with pain i would really like to have it drained as I cant walk either but im on my period and will be for some days yet has anyone had surgery while being on their period and can you… read more

A myHSteam Member said:

I have, I feel like I have more signs of inflammation when my period starts. I take epsom salt bath mixed with peppermint and tea tree oil

posted 29 days ago

Can Anyone Recommend An Adhesive Dressing That Won't Leave A Rash

Can Anyone Recommend An Adhesive Dressing That Won't Leave A Rash

hi ive recently had surgery for incision and drainage on a breast abscess theyve left the wound open and it has to be packed and covered with a dressing im using standard adhesive dressings that they have me at the hospital but now I have a very angry looking blister rash that is so itchy from where the dressings have been has anyone else had the same issue or can recommend a dressing that won't cause this ?

A myHSteam Member said:

I buy something off Amazon called BSN Medical Cover Roll Stretch. I haven’t had any issues. You just need to add gauze pads under it.

posted 18 days ago
Continue with Facebook
Sign up with your email
Already a Member? Log in