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Esteemed Contributor
Posts: 5,460
Registered: ‎05-12-2012

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....

Honored Contributor
Posts: 54,410
Registered: ‎03-29-2012

@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.  

Esteemed Contributor
Posts: 5,460
Registered: ‎05-12-2012

@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....

Respected Contributor
Posts: 3,054
Registered: ‎05-01-2020

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

Esteemed Contributor
Posts: 5,763
Registered: ‎07-26-2019

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 .

Esteemed Contributor
Posts: 5,460
Registered: ‎05-12-2012

@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.....

Honored Contributor
Posts: 54,410
Registered: ‎03-29-2012

@nana59 

Do you know this community on Facebook?

Respected Contributor
Posts: 2,298
Registered: ‎09-29-2015

@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.

Honored Contributor
Posts: 28,707
Registered: ‎03-09-2010

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. 

Respected Contributor
Posts: 2,886
Registered: ‎03-10-2010

@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.