Re: Hidradenitis

nana59 · ‎05-12-2012

@HisElk1 wrote:
@nana59, here's my response from 2018. I experienced what you are going through and highly recommend the surgery.

11-10-2018 05:08 PM
@nana59, I recall you posting about this several months ago and I shared my experience.

I was around 28 years old when I was first diagnosed and have not just turned 60. I saw a dermatologist who gave me cortisone injections in each one and said I'd have to come back every few months.

I got a 2nd opinion from a plastic surgeon. Upon my exam, he knew exactly what I had and said surgery was an option. Given both of my underarms were severely affected, I had the surgery and my sweat glands were removed. Yes, it was a pain in the butt, particularly when I had to use my arms to do "certain' things and washing my hair, etc. was difficult. He also mentioned that there was a chance I might get a few in other places which I did, but not to the extent that my underarms did and they eventually went away.

If I had it to do over again, I would have the surgery to have the glands removed. Knock on wood, I've been ok in both of those areas.

yes...i know i have asked for help before....this time i was wondering about laser treatments...glad your surgery was successful....a few years ago my primary doctor didn't recommend it....but maybe i should look into it......once again....thank you for your time...i appreciate it....

nana59 · ‎05-12-2012

@lolakimono wrote:
@nana59
Do you know this community on Facebook?

thank you......i'll look into it....

lolakimono · ‎03-29-2012

@nana59

https://hopeforhs.org/

Porcelain · ‎02-19-2014

@nana59 I just looked this up and found an article that says that laser hair removal has been found to help your condition. So you really may be on track with that idea. It could be a lot more cost effective and less invasive than surgery.

With lasers you've got the hair and skin color limitations, though. There has to be enough contrast between the color of the skin and the color of the hair being treated for the laser to be able to target the hair without burning. And I don't know if that would apply to you. If you are all set on that front, laser treatment sounds very promising.

When you’re accustomed to privilege, equality feels like oppression.
"Power without love is reckless and abusive, and love without power is sentimental and anemic." - Dr. Martin Luther King Jr

nana59 · ‎05-12-2012

@lolakimono wrote:
@nana59
https://hopeforhs.org/

thank you . thank you....you are so kind to spend your time trying to help me.......

egeria · ‎10-09-2010

@nana59

Here is my experience: I suffered for years with hidradenitis (occurring every few months, give or take) but wasn't diagnosed with it until a few years ago by my dermatologist at the time. She suggested Humira but I didn't want to do self-injections so I declined.

Last November I changed dermatologists and the new one suggested I try Doxycycline (an antibiotic). 100 mg capsules, once a day for 90 days. During that time I had no breakouts but I wanted to stop taking the Doxycycline to see if it was actually working or if that 90-day period was just pure luck. She recommended instead that I continue the medication at 50 mg, once a day. She said that I would not build up an immunity to the antibiotic at such a low dosage. I've been taking 50 mg once a day since March and have continued to have no breakouts.

I am in no way recommending this treatment for anyone else since it is a matter for an individual to discuss with a doctor; I only wanted to relate my personal experience.

Best wishes to you!

nana59 · ‎05-12-2012

@egeria wrote:
@nana59

Here is my experience: I suffered for years with hidradenitis (occurring every few months, give or take) but wasn't diagnosed with it until a few years ago by my dermatologist at the time. She suggested Humira but I didn't want to do self-injections so I declined.

Last November I changed dermatologists and the new one suggested I try Doxycycline (an antibiotic). 100 mg capsules, once a day for 90 days. During that time I had no breakouts but I wanted to stop taking the Doxycycline to see if it was actually working or if that 90-day period was just pure luck. She recommended instead that I continue the medication at 50 mg, once a day. She said that I would not build up an immunity to the antibiotic at such a low dosage. I've been taking 50 mg once a day since March and have continued to have no breakouts.

I am in no way recommending this treatment for anyone else since it is a matter for an individual to discuss with a doctor; I only wanted to relate my personal experience.

Best wishes to you!

thank you for your help....you reminded me that i did that same treatment many many years ago.....might be something to look into at this time....since this is the worst it has been....i've been dealing with a constant flare-up for the past few years....it's out of control.....but i haven't been to a doctor......because at 71....and having this disease since i was in my 30's....without any positive results from many different dermatologists....i have just given up....thanks for taking the time to offer your help....

Mindy D · ‎05-23-2010

@nana59 wrote:
i've been struggling with this awful skin condition for many years......have tried many different treatments...with no positive results......have been researching laser treatment.....would appreciate any info as to what has helped anyone who suffers from this disease...i'm at my wit's end........thank you....

@nana59 @Botox can be used to treat this.