Author Topic: A remedy from another HS sufferer  (Read 6534 times)

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Offline Fortuna

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A remedy from another HS sufferer
« on: Wednesday August 25, 2004, 07:36:25 PM »
hey guys, this lady is having three months of no breakouts with this remedy.

From: PretendPolly  (Original Message) Sent: 8/22/2004 11:12 AM
I know how you all suffer from HS, I've suffered for 15+years myself.  I am sending this info, so that I can at least TRY to help other out there.  I know how bad you are hurting because I've been there. I've even been on the brink of suicide, just to stop the pain. I was getting the HS every single day for the last 4 months.  The "boils" would last for almost 3 weeks at a time.  They were as big as an orange sometimes.  Gosh, they hurt like hell.  I tried every single thing I could think of as I'm sure most of you have too.  I've been through countless dr's and medication and so-called "remedies".  I've had 4+ surgeries and even got addicted to pain meds since the dr's could only give me that for the pain.  I'm happy to report I'm NOT addicted anymore & during the recent time when I had the HS everyday, I never once resorted to the pain meds.  I suffered BIG TIME!
Here's what I found:  A new dermatologist gave me an antiboitic wash called "PhisoHex" it's pretty much the same thing a surgeon uses to wash his/her hands before surgery.  I use it every time I shower regardless of "outbreaks" (dr. told me to use it twice, but it's still been working for me only once a day) and I take an antiboitic pill only ONCE a day called: "Minocycline"(100mg).  I've been pain free for going on 3 months now.  Not a single "boil" or outbreak.  I swear to you that I didn't believe it when i first tried it that it would work.  I've been let down and disappointed so many times by dr.'s and their "quick fixes" and surgeries, that I couldn't believe this would be all it took to "cure" me.  
I strongly urge anyone suffering to at least give this remedy a try.  It can't hurt as much as a surgery would - right?  If you do try it, I would love to hear any feedback (good or bad) to see if this would work for someone else.  I know HS is such a crappy thing and certain remedies may not work for everyone but short of surgery and the possibility of radiation treatments (yes, I've heard everything!) this remedy may at least lessen some of the outbreaks and pain.  I'm honestly flabbergasted that this even worked for me.  I was willing to hope for "outbreaks" only once a month to "live with it" but I got better than that.  I will honestly tell you if and when I do get a "boil" and I am making a journal of my progress.
Keep me posted. and here's wishing you all a pain free life.
Love, pretendpolly (email me any stories if you try this remedy:

When we get our own thread, this should be there.
"Try anything once, come hot, come cold.  If we're not foolish young, we're foolish old."
Canterbury Tales, Geoffrey Chaucer
"It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." - Gaius Julius Caesar
Luceo Non Uro "I shine not burn

Offline Bev

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Re:A remedy from another HS sufferer
« Reply #1 on: Thursday August 26, 2004, 08:39:22 AM »
Interesting Read Jess ;)Where did that come from...Just me been nosy as usual ;D
Love and Cuddles Bev 

Celery Peach

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Re:A remedy from another HS sufferer
« Reply #2 on: Thursday August 26, 2004, 09:04:27 AM »
 ??? I think I better just  :-X it here. I feel so bad Jess, cos it just feels that I am allways being argumentative with you, I dont mean to be, honestly  :hugs:

Last time I went to the Derm he gave me the same combination, Minocycline & Hibiscrub. I am using the scrub, but gotta say I dont think its any better than anything else I wash with, but I am doing as I am told for once  ;) cant do any harm I guess.

The Minocycline, is just another Tetracycline (acne medicine) altho it is a posh one, with added benefits for reducing swelling. I dont doubt that it is helping PretendPolly. When I started on Tetracyclines approx 4-5 years ago, I did see a marked improvement, though it tailed off in time. After 3 years I came off them because I was having related stomach problems.

I'm against antibiotics taken routinely, and for how long ? I keep asking, if there is no infection present in 50% of HS lesions swabbed then why take an antibiotic ? Derms continue to give us drugs for Acne, the way I see it, its just so they can be seen to be doing something. How about research and development of specific HS meds instead ?

I am always happy to hear about people getting relief from their symptoms  :) I hope it continues to work for Polly and gives her a long respite. I wont be taking them tho, and I will have to explain that to my Derm soon  :-\

Offline Bev

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Re:A remedy from another HS sufferer
« Reply #3 on: Thursday August 26, 2004, 09:16:48 AM »
Another post from someone who belives he is free from HS
I have obtained Permission from Him to post this here




My name is Mike . I have been suffering
from Hidradenitis for 18 years (was stage IV). I have had multiple
surgeries, Steroid Injection, Accutane, etc and nothing has worked.

3 Years ago my kidney failed and I was put on dialysis. I wanted a
transplant, but they told me with this disease I would not be a
candidate. I went though many test to try to solve this disease.
Recently with the help of my Kidney Doctor, Dermatologist and
Transplant Surgeon looking for answers they found a new medication
that was just in early trials for Hidradenitis and I wanted to try
it. The medication is Remicaid or Imfliximab. It is delivered
through IV over 3 hours. I two treatments back in April and all the
swelling, drainaige and especially pain was completely eliviated. I
was able to have thr transplant and am still free of Hidradenitis.
Please have your doctors look into this medication and make them give
you the treatment.Hope is here.





Love and Cuddles Bev 

merciememommie

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Re:A remedy from another HS sufferer
« Reply #4 on: Thursday August 26, 2004, 01:00:05 PM »




Quote
My name is Mike . I have been suffering
from Hidradenitis for 18 years (was stage IV). I have had multiple
surgeries, Steroid Injection, Accutane, etc and nothing has worked.

3 Years ago my kidney failed and I was put on dialysis. I wanted a
transplant, but they told me with this disease I would not be a
candidate. I went though many test to try to solve this disease.
Recently with the help of my Kidney Doctor, Dermatologist and
Transplant Surgeon looking for answers they found a new medication
that was just in early trials for Hidradenitis and I wanted to try
it. The medication is Remicaid or Imfliximab. It is delivered
through IV over 3 hours. I two treatments back in April and all the
swelling, drainaige and especially pain was completely eliviated. I
was able to have thr transplant and am still free of Hidradenitis.
Please have your doctors look into this medication and make them give
you the treatment.Hope is here.

 wow thats good if it works Ill have to talk to my derm

Offline Fortuna

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Re:A remedy from another HS sufferer
« Reply #5 on: Thursday August 26, 2004, 02:36:30 PM »
Bev it's off the MSN support group.
Cp, I don't think you are argumentitive with me at all, since no one responds the same to any treatment, I thought that maybe some people would have some relief from this.
I'll give anything a shot even the IV drug.  Unless I can't afford it and that's a real possibility.
Any long term anti will make you feel poopy, after a time, especialyl considering that they lose their effectiveness after so long.
 :cf:


"Try anything once, come hot, come cold.  If we're not foolish young, we're foolish old."
Canterbury Tales, Geoffrey Chaucer
"It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." - Gaius Julius Caesar
Luceo Non Uro "I shine not burn

Offline Bev

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Re:A remedy from another HS sufferer
« Reply #6 on: Thursday August 26, 2004, 02:40:22 PM »
No Jess .....It wasn't  off MSN
Love and Cuddles Bev 

Offline Fortuna

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Re:A remedy from another HS sufferer
« Reply #7 on: Thursday August 26, 2004, 02:42:14 PM »
The one I posted was, they re emailed to me directly.  
"Try anything once, come hot, come cold.  If we're not foolish young, we're foolish old."
Canterbury Tales, Geoffrey Chaucer
"It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." - Gaius Julius Caesar
Luceo Non Uro "I shine not burn

Offline Bev

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Re:A remedy from another HS sufferer
« Reply #8 on: Friday August 27, 2004, 07:11:43 AM »
Hi Jess Here is some more info on  Imfliximab..
http://www.skincell.org/yabbse/index.php/t6501.php
« Last Edit: Friday August 27, 2004, 07:12:22 AM by Bev »
Love and Cuddles Bev 

Offline Fortuna

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Re:A remedy from another HS sufferer
« Reply #9 on: Friday August 27, 2004, 02:36:03 PM »
That sounds good, too.
But I won't hold my breath.
Who gives you this shot?  The Derm? Or do you do it yourself once its prescribed?  I can't give myself a shot, oh, no.
I always respond so well to anti's, and I have another appt, today, with a specialist, so I'll be taking both posts with me.
"Try anything once, come hot, come cold.  If we're not foolish young, we're foolish old."
Canterbury Tales, Geoffrey Chaucer
"It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." - Gaius Julius Caesar
Luceo Non Uro "I shine not burn

peterb

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Re:A remedy from another HS sufferer
« Reply #10 on: Friday August 27, 2004, 02:56:37 PM »
Remicade is one of newer biologics.  It is not a cure, it is mainly used now on P and PA sufferers.  Here is a link I posted months ago on this and other biologics,

Remicade / Infliximab
Who makes it? Centocor produces Infliximab under the brand name Remicade.

How does it work? Previously Infliximab has been used to treat Crohns disease, which is an inflammation of the bowel and also for rheumatoid arthritis. Like Etanercept (Enbrel) it blocks the signal that causes cells to become inflamed.

How is it administered? Remicade is administered as an infusion in specialist clinics, a process which can take up to four hours. At first the dose will be three infusions during the first six weeks of treatment and subsequently every eight weeks or as needed to maintain remission.

What are the side effects? The most common side effects experienced by people taking part in the trials were headaches, nausea, cough, sinusitis, rash or itchy skin at the infusion site and upper respiratory infections. Remicade may contribute to the emergence of TB in patients who have a silent or dormant TB infection, it is also not recommended for people who have hives, difficulty breathing or low blood pressure.

Will it work? Although to date Remicade has been used tentatively in the treatment of psoriatic arthritis it is also being tested to see if it will be an effective treatment for psoriasis. A small-scale research study in the States showed that patients receiving Infliximab as the only treatment for their psoriasis experienced rapid and clinically positive results.

http://www.skincell.org/yabbse/index.php?board=4;action=display;threadid=5270;start=0#lastPost