topic Re: Hidradenitis in Wellness

Hidradenitis

nana59 — Sat, 10 Jul 2021 15:29:42 GMT

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....

Re: Hidradenitis

lolakimono — Sat, 10 Jul 2021 15:30:40 GMT

@nana59

I'm sorry that you're dealing with this. I do not have this, but I have seen it.

I'm not being snarky when I suggest this.

Have you considered reaching out to Dr. Lee? She has a TV show where she flies people from all over the country (and sometimes ourside of the U.S.) and I have seen her assist when no other doctors would "touch" whatever the person was suffering with. She is really compassionate.

Re: Hidradenitis

nana59 — Sat, 10 Jul 2021 15:37:37 GMT

@lolakimono wrote:
@nana59
I'm sorry that you're dealing with this. I do not have this, but I have seen it.

I'm not being snarky when I suggest this.

Have you considered reaching out to Dr. Lee? She has a TV show where she flies people from all over the country (and sometimes ourside of the U.S.) and I have seen her assist when no other doctors would "touch" whatever the person was suffering with. She is really compassionate.

i watched an episode of dr lee....the patient had hidradenitis....and she sympathically told her there was nothing she could do for her....she suggested a support group....made me cry.....i've been to many dermatologists...they all say there needs to be more research to help with this disease....

Re: Hidradenitis

ThinkingOutLoud — Sat, 10 Jul 2021 16:05:35 GMT

I'm not familiar with this condition but when traditional drs haven't helped, start calling/researching alternatives. Accupuncturists, herbalists, naturopaths, etc.

Re: Hidradenitis

skatting44 — Sat, 10 Jul 2021 16:19:05 GMT

It may be helpful to seek care at a major medical teaching hospital such as Johns Hopkins, Mayo clinic as those institutions engage in research. The immune system can be so powerful in attacking one's body.

Have you tried Humira ? Hope you find some treatment that helps you .

Re: Hidradenitis

nana59 — Sat, 10 Jul 2021 16:56:06 GMT

@skatting44 wrote:
It may be helpful to seek care at a major medical teaching hospital such as Johns Hopkins, Mayo clinic as those institutions engage in research. The immune system can be so powerful in attacking one's body.
Have you tried Humira ? Hope you find some treatment that helps you .

was thinking about a research hospital in boston....i live in ri....doing some reading about it....and yes....i have tried humira twice....second time was a much higher dosage....had a terrible reaction....had to stop immediately....thank you for caring.....

Re: Hidradenitis

lolakimono — Sat, 10 Jul 2021 17:01:04 GMT

@nana59

Do you know this community on Facebook?

Re: Hidradenitis

HisElk1 — Sat, 10 Jul 2021 17:06:22 GMT

@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.

Re: Hidradenitis

Shelbelle — Sat, 10 Jul 2021 17:29:44 GMT

I was also going to suggest seeing Dr Sandra Lee, so sorry it has already been established she cannot help. Not a bad idea to contact her office, new meds are on the horizon everyday and she would know.

Re: Hidradenitis

tiny 2 — Sat, 10 Jul 2021 17:32:52 GMT

@nana59, I have seen a few cases where plastic surgery has really helped. There are also some other biologics that are also used. Lots of people have trouble with Humira. Before deciding on a surgeon do some research to see if they deal with this. It may be that several surgeries are required depending on how involved your disease is,how many locations, and how much tissue damage there is. They not only remove the sweat glands but also any tracts under the skin. If there is a lot of tissue loss with the removal then sometimes grafts are also involved.

Re: Hidradenitis

nana59 — Sat, 10 Jul 2021 17:48:32 GMT

@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....

Re: Hidradenitis

nana59 — Sat, 10 Jul 2021 17:50:02 GMT

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

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

Re: Hidradenitis

lolakimono — Sat, 10 Jul 2021 17:59:01 GMT

@nana59

https://hopeforhs.org/

Re: Hidradenitis

Porcelain — Sat, 10 Jul 2021 19:00:37 GMT

@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.

Re: Hidradenitis

nana59 — Sat, 10 Jul 2021 20:59:12 GMT

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

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

Re: Hidradenitis

egeria — Sat, 10 Jul 2021 21:05:05 GMT

@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!

Re: Hidradenitis

nana59 — Sat, 10 Jul 2021 21:31:30 GMT

@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....

Re: Hidradenitis

Mindy D — Sat, 10 Jul 2021 22:38:25 GMT

@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.

Re: Hidradenitis

SeaMaiden — Sat, 10 Jul 2021 23:02:45 GMT

@nana59 This article was interesting on diet and lifestyle.

https://www.healthline.com/health/hidradenitis-suppurativa-diet

Re: Hidradenitis

Susan Louise — Sat, 10 Jul 2021 23:21:46 GMT

Google the following for a youtube video...

HIDRADENITIS SUPPURATIVA: Q&A WITH DERMATOLOGIST DR DRAY