Author Topic: Hidradenitis Suppurativa Articles  (Read 141311 times)

0 Members and 1 Guest are viewing this topic.

Offline csharp

  • Registered member
  • *
  • Posts: 4
  • Gender: Female
Re: Hidradenitis Suppurativa Articles
« Reply #80 on: Wednesday February 01, 2006, 08:44:53 PM »
I have suffered from HS FOR 20 YEARS ON AND OFF.
I COULD NOT GO A WEEK WITHOUT A NEW BUMP FORMING.
BUT IN NOVEMBER OF 2005 NOV1ST TO BE EXACT. MY DOCTOR
PESCRIBED A DRUG NOT AN ANTIBOTIC AND I HAVE HAD NO NEW ONES FORM.
WHAT A THRILL. I FEEL LIKE I GOT MY LIFE BACK. AND I HOPE IT KEEPS WORKING.
CSHARP

Celery Peach

  • Guest
Re: Hidradenitis Suppurativa Articles
« Reply #81 on: Friday February 03, 2006, 09:43:09 AM »
 ??? I seem to keep losing this article, and its one of my favourites, I highly rate Dr Von der Werth :

http://www.hs-usa.org/pub/articles/2001_HS_VDW.pdf

Offline darrens_angel

  • Junior Member
  • **
  • Posts: 68
  • Gender: Female
  • My wonderful husband Darren! ( and how I got my nick name :P )
Re: Hidradenitis Suppurativa Articles
« Reply #82 on: Sunday April 16, 2006, 07:34:02 AM »
MY DOCTOR PESCRIBED A DRUG NOT AN ANTIBOTIC AND I HAVE HAD NO NEW ONES FORM.
CSHARP

CSHARP,
You've probably answered this before, but I was wondering what drug you were referring to? ( By the way, congrats on the success!)

ThanksĀ  :)


"Do unto others, as you'd have others do unto you".

Offline Rusty

  • Registered member
  • *
  • Posts: 6
  • Gender: Male
  • Registered SkinCell Member
    • Debris Music
Re: Hidradenitis Suppurativa Articles
« Reply #83 on: Monday June 12, 2006, 07:06:48 AM »
Hi Celery Peach, it's Rusty!!    You helped me out a few years ago with all the info on HS that you sent me. I have continued trying different remedies, but have only had short term relief. At one point my condition got worse, leaving me with large scars on my neck, arms, and butt. As soon as one healed, another formed, old scars formed sinus tracts, and drained continuously. Tracts kept forming on existing areas and extended outward. I could never go outside during warm weather, except in long sleeve shirts. I also spent a fortune on bandages to soak up the fluid. I was embarressed to death. I never thought it would end. But over the past year I have found a new therapy. And it works for me! I now go out in short sleeve shirts and have not spent a dime on bandages. I came to the conclusion that skin disorders don't make enough money for doctors to research. If it did, there would be cures, and not opinions. Research seems very limited. Anyway, I felt compelled to contact you and let you know what has been working for me. This may sound crazy, but I now drink 4 beers every night. I never miss a night. And it works! The constant alcohol flow somehow suppresses the outbreaks. After 6 months of this I stopped for 2 weeks, I broke out immediately, as soon as I started the 4 beer rule, it stopped again. Please don't think I'm an old drunk, just a victim tired  of HS. I got this idea from reading about IV drips of pure grain alcohol that has cured many disorders. Althouth, this is not a cure, it does allow me to lead a normal life again. I did read about the others who have flare ups after a drinking binge, I did notice that also, but decided to do a constant flow rather than a sugar overload. I think allowing your system to adjust is the key, it will take a few weeks to notice improvement. Once again, thank you for leading the fight against HS. Celery you really are a peach.  Love Rusty

Offline cemeterybride666

  • Full Member
  • ***
  • Posts: 155
  • Gender: Female
Re: Hidradenitis Suppurativa Articles
« Reply #84 on: Friday October 20, 2006, 12:05:56 AM »
4 beers a day ? As if living with hs wasn't enough of a reason already. I am 34 in stage 3 and ready to try anything...I do not drink but for relief...hope the liquor store is still open...I'll get back to you on any results.  :beer:

Offline ket

  • Registered member
  • *
  • Posts: 12
  • Gender: Female
Re: Hidradenitis Suppurativa Articles
« Reply #85 on: Sunday November 12, 2006, 12:46:37 PM »
hi all

havent been on for a while, had some dark times just lately! :(
have just been told on wed 7 nov that i have to have anova operation in january so been down, they done listen and just nod when u tell them u want ur life back, hate that they dont understand wot we go thro

anyway got to keep smilin, hope everyone is doing ok! been thinking of u guys

xx
Smile everyday no matter wot life throws ur way :-)

Offline cemeterybride666

  • Full Member
  • ***
  • Posts: 155
  • Gender: Female
Re: Hidradenitis Suppurativa Articles
« Reply #86 on: Tuesday November 14, 2006, 03:04:13 AM »
hi ket
try to keep your chin up. think about nov. & dec. for now. jan. will be here too soon i know. i hope it goes well for you.

Offline MIGHTY

  • Registered member
  • *
  • Posts: 18
Re: Hidradenitis Suppurativa Articles
« Reply #87 on: Wednesday November 15, 2006, 10:44:34 PM »
I have suffered from HS FOR 20 YEARS ON AND OFF.
I COULD NOT GO A WEEK WITHOUT A NEW BUMP FORMING.
BUT IN NOVEMBER OF 2005 NOV1ST TO BE EXACT. MY DOCTOR
PESCRIBED A DRUG NOT AN ANTIBOTIC AND I HAVE HAD NO NEW ONES FORM.
WHAT A THRILL. I FEEL LIKE I GOT MY LIFE BACK. AND I HOPE IT KEEPS WORKING.
CSHARP

What drug is it?

Offline cemeterybride666

  • Full Member
  • ***
  • Posts: 155
  • Gender: Female
Re: Hidradenitis Suppurativa Articles
« Reply #88 on: Thursday November 16, 2006, 12:07:57 AM »
we all want to know what csharp is taking but she isn't telling...? :-\

Offline 9055

  • Registered member
  • *
  • Posts: 21
  • Gender: Female
Re: Hidradenitis Suppurativa Articles
« Reply #89 on: Thursday May 17, 2007, 02:21:10 AM »
what is the drug please tell us  :'(

Offline Lana-84

  • Registered member
  • *
  • Posts: 13
  • Gender: Female
Re: Hidradenitis Suppurativa Articles
« Reply #90 on: Thursday July 31, 2008, 09:23:00 PM »
Yes..Please DO tell us the name of the med.. ???

Also is there other more recent Hidradenitis Suppurativa articles/threads in here? I have HS and Crohn's disease.
Doctors seem very hesitant  to accept that may even be a correlation between the two. :-X :(
« Last Edit: Friday August 01, 2008, 05:53:44 AM by Lana-84 »
I JUST FOUND OUT TODAY WHAT I HAVE! I HAVE HAD IT FOR OVER 30 YEARS!! I AM GLAD TO FINALLY KNOW!

LANA :)

Offline janeybug63

  • Registered member
  • *
  • Posts: 1
Re: Hidradenitis Suppurativa Articles
« Reply #91 on: Friday August 01, 2008, 12:51:46 AM »
I have been trying to find out what is wrong w/ me for 25 or so years Finally in 2006 I was diagnosed w/ HS
I just deal with the outbreaks when they occur.A surgeon years ago created a "hole" for this to drain when neccessary
and i think that actually helped keep it isolated to my underarm. I believe they are correct in that it can be inherited
becasue i believe my younger brother has it and he wont see a doctor about his condition.
I did not know this website existed until i finally decided to do some research. I have no home remadies, i just
drain it w/ a hot cloth and i use quartizone to help keep it "soft" I can't believe i am typing out all this stuff, it is such a
deep dark secret for me(except family and my husband) I have a new surgeon and she thinks i should get my underarm reconstructed
i am not ready for that yet.Has anybody been through surgery for this ? Thanks everybody for listening.
janeybug63  :-[

Offline Lana-84

  • Registered member
  • *
  • Posts: 13
  • Gender: Female
Re: Hidradenitis Suppurativa Articles
« Reply #92 on: Sunday August 03, 2008, 05:58:27 PM »
Janie..hi there, just saw your post. I have had several lesions incised,
but never the surgery. I also found out about the same time you did
what this is..I am 60 years old..I HOPE that it does not get worse with
age. (the only reason I have handled it so well, is I have taken steps
to avoid the associated problems). I wonder if there is other post on
here regarding this problem, as the post are very outdated. I have
searched and have not found any.
Janie..I seem to do well with EXTREME cleanliness (just makes me feel
better) and I take antibiotics regularly. I am large but not huge in weight,
but I find when I gain too much weight, they are MUCH worse. I also find
that proper diet, activity, and exercise, as well as a positive attitude
seem to help me, a bit anyway.
I (like you) am very embarrassed about this disease. When I was diagnosed
with Crohn's disease (I believe the two to be related, as they relate to
flares in the IBD and the outbreaks of HS) anyway no one even talked
about Crohn's (IBD) then!
Just wanted to know, I am here from time to time if you want to talk and
you are in my prayers.
Blessings,
Lana

I JUST FOUND OUT TODAY WHAT I HAVE! I HAVE HAD IT FOR OVER 30 YEARS!! I AM GLAD TO FINALLY KNOW!

LANA :)

Offline anniemary40

  • Senior Member
  • ****
  • Posts: 388
  • Gender: Female
Re: Hidradenitis Suppurativa Articles
« Reply #93 on: Sunday August 03, 2008, 07:35:24 PM »
hi janie, nice to tk to you. Have had hs for over 20 years and have had over 20 surgeries. My hs affects my underarms, anal and groin areas. For years had incision and drainage surgeries and then 8 years ago i had major surgery on my right arm. Unfortunately after 3 months the hs returned but had the surgery repeated and have had no trouble since. It is quite drastic surgery with quite a long recovery but in my eyes well worth it. I've had similar surgerys in both my groins but unfortunately have had no success, my hs has progressed to stage 3 now but i will keep going until i can get my life back. Everyone has different experiences with surgery and i think it is an individual choice. I hope whatever decision you make is the right one for you and if you want to ask any questions or just chat i will be more than happy to. take care     annmarie

Offline Lana-84

  • Registered member
  • *
  • Posts: 13
  • Gender: Female
Re: Hidradenitis Suppurativa Articles
« Reply #94 on: Sunday August 03, 2008, 09:26:30 PM »
Hi Anniemarie..I ALSO would be glad to have people to talk with about this
thanks.
Lana  ;)
I JUST FOUND OUT TODAY WHAT I HAVE! I HAVE HAD IT FOR OVER 30 YEARS!! I AM GLAD TO FINALLY KNOW!

LANA :)

bunnie

  • Guest
Re: Hidradenitis Suppurativa Articles
« Reply #95 on: Sunday August 03, 2008, 10:04:13 PM »
Hi Lana welcome! just to answer this lana...
Quote
Doctors seem very hesitant  to accept that may even be a correlation between the two
The correlation only applies to people who have crohns disease. Not everyone with HS or any other autoimmune disease has crohns. HS is an autoimmune disease. Crohns is also an autoimmune disease. People who carry the genetic predisposition to having an abnormal immune response targeting *self * tissues or organs , blood etc. can have more than one autoimmune condition (there are over 80 different conditions) manifesting at the same time but in a different way, as is evident in you.
This genetic predisposition may trigger an abnormal response in some people to the normal bacterium in the gut.The pathogenic result of which, is Crohns Disease
Quote
Currently, most investigators believe that some people with the disease develop it because of an abnormal immune response to bacteria that normally live in the intestine.
This abnormal response to the bacterium in the gut, could then trigger off other mutated genes you may have, resulting in another abnormal immune response , the pathogenic result of this abnormal immune response (autoimmune response ) in you being HS. Crohns is the pathogenic result of predisposing genes, triggering an abnormal immune response to the normal bacterium in the gut.
That in italics is the correlation and the way crohns is linked, but it doesn't apply to everyone with HS or any other autoimmune conditions. The abnormal immune response which occurs from having mutated genes carrying the predisposition, occurs to different factors in each individual, although the pathogenic result of their abnormal immune response may be also HS.
Some autoimmune conditions also carry a mutated hereditary gene predisposing to a specific disease itself, like psoriasis, diabetes, and Crohns.
Quote
Heredity. About 20 percent of people with Crohn's disease have a parent, sibling or child who also has the disease. Mutations in a gene called NOD2/CARD15 tend to occur frequently in people with Crohn's disease and seem to be associated with an early onset of symptoms as well as a high risk of relapse after surgery for the disease. Scientists continue to search for other genetic mutations that might play a role in Crohn's.

Very best wishes, and again a warm welcome. (I'm just a bit older than you Lana)
Bunnie
PS just to add some treatments...
For people with mild cases, a doctor injects corticosteroids into the area and prescribes antibiotics, such as tetracycline
or doxycycline...to be taken by mouth.
Some Trade Names
ACHROMYCIN V
TETRACYN
SUMYCIN
or erythromycin Some Trade Names
E-MYCIN
ERYTHROCIN
ILOSONE
 For severe cases, isotretinoin  Trade Name  ACCUTANE  an anti-inflammatory drug, may be given by mouth.
Clindamycin applied topically is also effective.
Trade Name CLEOCIN
In some cases, a doctor cuts open the abscesses to drain the pus.
Laser treatment has also been used. In severe cases, cutting out the involved area followed by skin grafting may be necessary.
« Last Edit: Monday August 04, 2008, 09:05:05 AM by bunnie »

Offline Lana-84

  • Registered member
  • *
  • Posts: 13
  • Gender: Female
Re: Hidradenitis Suppurativa Articles
« Reply #96 on: Sunday August 03, 2008, 11:29:20 PM »
 :)Thank you so much for all the wonderful info..for many years..(like the Crohn's) I just
sorta KNEW I had something and did not really want to know. (isn't that stupid?)  ;D

We have many MANY auto immune type diseases (in our family)and I also have asthma and
who knows what all else. Many of the stories related to this disease are dreadful, and I at
times hate to even read about it. :P

Bunnie and everyone..one question if I may. I have a HUGE lesion in my groan at this time,
that started our like normal..itch, swell, pain, bleeding and you know. :-X.it seemed to 'explode'
and felt better..The location has a painless swelling now, that has turned almost rock hard.
I have not had one like this before. Does anyone have any info?

Many thanks to you all and blessings of health.

Lana

I JUST FOUND OUT TODAY WHAT I HAVE! I HAVE HAD IT FOR OVER 30 YEARS!! I AM GLAD TO FINALLY KNOW!

LANA :)

bunnie

  • Guest
Re: Hidradenitis Suppurativa Articles
« Reply #97 on: Monday August 04, 2008, 08:29:54 AM »
Hi Lana, there are many types of cysts lana, but from what you have said you MAY have a sebaceous cyst or an Apocrine hidrocystoma I did a search for both sebaceous cysts and Apocrine hidrocystoma, and found these links.... and from them , I quote...
Quote
A sebaceous cyst is a closed sac found under the skin, usually on the trunk, neck, or face. It usually is a slow-growing lump that can move easily under the skin. Sebaceous cysts are filled with a oily or cheese-like matter and usually are painless. In some cases, however, cysts can get inflamed and become tender to the touch. Sebaceous cysts also are called epidermal cysts, keratin cysts, or epidermoid cysts
http://my.clevelandclinic.org/disorders/cysts/sebaceous_cysts.aspx
Apocrine hidrocystomas
Quote
are benign cystic proliferations of the apocrine secretory glands. (The target sites of HS )These cysts most commonly appear as solitary, soft, dome-shaped, translucent papules or nodules and most frequently are located on the eyelids, especially the inner canthus. Apocrine hidrocystomas grow slowly and usually persist indefinitely.
The exact stimulus for the development of an apocrine hidrocystoma is unknown. Plausible causes of the closely related eccrine hidrocystoma include occlusion or blockage of the sweat duct apparatus, which results in the retention of sweat and a dilated cystic structure.Tumors also have been reported to occur in the axillae, and in the anal region.
I understand too that one can have a dermatofibroma-stroma type cyst which can be found in apocrocine glands , which are more solid. I'm not sure, but I think these build up due do to scar tissue in that area. A dermatofibroma cyst is basically scar tissue and  stroma- like tissue is connective type tissue.

Bunnie
« Last Edit: Monday August 04, 2008, 09:07:29 AM by bunnie »

Offline anniemary40

  • Senior Member
  • ****
  • Posts: 388
  • Gender: Female
Re: Hidradenitis Suppurativa Articles
« Reply #98 on: Monday August 04, 2008, 02:54:13 PM »
hi lana, would be very happy to talk to you. Was reading what bunnie replied and would tend to agree. This "lump" does sound very much like scar tissue. I fully agree with you on the positive thinking. When i joined the forum (quite recently), i was feeling very down. I had recent major surgery in my left groin and had spent a month in hospital with infection. Unfortunately the surgery was unsuccessful and the hs is back with a vengence, but am trying to remain positive. Bunny, cazangel just to name a few are fantastic support to anyone joining the forum and take time to welcome everyone so i have to say i do feel much better. Everyone who suffers hs does so in different ways and have different things that work for them. I went to a friends party last night, first social outing in over a year and had such a good night. Obviously wasn't up for dancing but spent the night downing beer with my friends. Needless to say am paying for it today but it was worth it!! Take care lana and hope to chat soon x     annmarie

Offline CazAngel

  • SkinCell God
  • *****
  • Posts: 580
  • Gender: Female
  • An Enigma
    • My Facebook page.
Re: Hidradenitis Suppurativa Articles
« Reply #99 on: Monday August 04, 2008, 04:14:55 PM »
Hi, I just wanted to pop in and say I'm here if Lana or Annmarie or anyone wants to talk, I know HS can cause loneliness or feeling alone. I don't know that I have much to share with this thread.... I noticed when I stopped eating processed food and became a vegetarian, I didn't have has many or as bad flare ups, but I'm also losing weight, I am over weight. Take care all. :bighug:
With care,
Caz (Carolyn)
xx :hugs:

"Nonviolence is not a garment to be put on and off at will.
Its seat is in the heart, and it must be an inseparable part of our being." - Gandhi

"I am enough of an artist to draw freely upon my imagination." - Einstein