We have had several in the HS World that have tried Accutane and had problems, some Severe.

     Below is Karen L's story.  Please read and think.  Think that five or six times before taking it, research it for your specific disease/s, research the warnings, know what you are getting yourself into, and then think some more, and then re-read Karen's story.

 Karen's Story

WARNING! This is my experience I am sharing with you when I took
accutane. You can search the web and find many other stories like
mine. However, the majority of them did not even have HS … they took
it for cystic acne. Many of them are unable to tell their story
because of serious mental complications while taking this drug and
some are no longer with us … MORE THAN I would like to share. We
almost lost my brother to accutane. But I was so desperate at the
time to get my life back that I ignored what had happen to my brother
and it almost lead to my destruction.

I have heard many people say "How successful it was" and "the way to
go" so hey why not? I will try it. How bad could this drug be if
everyone is doing it?
Went in to see the dermatologist and told him I would like to try
accutane and he went over the precautions and warnings.

1. Birth defects. Accutane can cause birth defects (deformed babies)
if taken by a pregnant woman.
(Didn't really apply to me my tubes where tied)
Accutane can cause birth defects, premature births, and death in
babies

2. Mental problems and suicide.
(My brother when taking accutane was put on antidepressants because
of being severely depressed being on the strong he was 15)

3. Serious brain problems.
Accutane can increase the pressure in your brain. This can lead to
permanent loss of sight, or in rare cases, death.

4. Abdomen (stomach area) problems
Certain symptoms may mean that your internal organs are being
damaged. These organs include the liver, pancreas, bowel
(intestines), and esophagus (connection between mouth and stomach).

5. Bone and muscle problems
There are reports that some patients have had stunted growth after
taking Accutane for acne as directed. There are also some reports of
broken bones or reduced healing of broken bones after taking Accutane
for acne as directed.

And the list went on and on ... Looking back now and going through
this with each of you, I am thinking what the heck did I take this
drug for?

I was already in stage 3 under my arms.
Groin was in remission no activity for about 4 years (why not? Not a
clue but happy about it)
Never had them anywhere else but my groin at first and then it
stopped there and went straight for underarms.

Doctor went on to inform me that he didn't see where Accutane would
help HS patients (should have been a clue but as we know doctors know
very little about this disease so I thought he knew very little about
Accutane and HS hmmm)

Well, after going through all precautions with me I was still bound
and determined to go ahead along with it. He prescribed it for me. I
went to lab and made my very first lab visit which is vital while
taking Accutane
He started me out on a small dosage at first.

My first month I was fine … a cyst here or there...
One thing I do need to mention that this story will talk a lot about
is this insert from the Accutane book I received through my doctor at
the appointment

Sometimes, people's acne may get worse for a while. They should
continue taking Accutane unless told to stop by their prescriber.

Okay no big deal the book said it could become worse. Not a big deal.
Went to the doctors he checked me out documented the new cyst looked
over lab everything looked good.

Month 2
Underarms new cyst and open sores.
Went in and he shot the underarms with a cortisone shot to bring down
the swelling so I could move it. Tests were rising a small bit he
said this was common and not alarming.

Month 3
Breast lesions, sacks filled with puss and blood that you could
actually squish and move around. Cystic acne appeared on my face
(this right here (cystic acne)can also be just as painful as HS)
Groin once again very active with open sores and cyst.
The doctor saw how much pain I was in asked during this month if I
wanted to get off of it. I said no "It says it will get worse before
it gets better"
I am only in my 3rd month.

Month 4
Breast covered (very depressed over this) my husband had to help me
wrap an ace bandage around me to hold all gauze in place. They burned
stayed open (the sores on breast) new ones forming. Underarms were
just as active with lesions; drainage and redness very tender at this
point had to start keeping my left arm in sling so it wouldn't move.
Right arm constantly with an ice pack scars were bulging and very
irritated.
I was becoming a mummy.
(Note: a lot of you right now might be thinking why didn't your
husband notice this or anyone in your family at the time? Well, at
the time my husband came in to wrap me up I already had the gauze in
place when he asked me why so much I replied didn't want to cut it up
so just left it like it was and went on. I never showed really how
much pain I was in because it was going to get worse before getting
better and I didn't know if he would understand this and if he would
have forced me to get off of it)
Went to the doctors he looked me over urged me once again to consider
going off the Accutane I didn't listen stated I was fine.

Month 5
Not a good month at all constant fevers, pain, chills like I was
constantly fighting the flu.
Breasts were red, leaking open not closing, more and more were
starting to rear there ugly little heads. Arms were so bad couldn't
move them at all couldn't hold my babies couldn't focus right or keep
my attention on things.
My husband's red flags went up and action was taken.
I was now a mummy. Couldn't walk it hurt so bad the groin area was
totally under attack all the way down the leg. My back started to
form lesions tiny bumps all down my arms. My body was under attack. I
can remember waking up one morning gauze was everywhere and the
sheets had stuck to all my open lesions I had to take a shower to get
the sheet soaked to get it off me.
Went in I was immediately taken off Accutane before and I quote from
the doctor "The infections take over and there won't be another
visit next month." My husband sat there by me the whole time not
understanding why I would do this to myself. I think at that time if
there was a stage 10 I would have been there and then some.
He then understood what HS was doing to me inside as well as out and
I hated the fact of feeling dirty all the time, not being able to
play with my children, constantly having to say I can't it hurts or I
will just stay home you guys go have fun. The only time I had relief
was in the shower. I did not realize by taking the Accutane I did
make the HS spread and become much worse when in fact all I wanted
was a miracle drug to make it all go away.
I was 27 at the time. Yes, I should have seen the warning signs, yes
I should have done this and should have done that but then I like to
look at it this way instead of putting it in a negative prospective
and dwelling on my stupid insane mistake.
I am here and was allowed to stay on this earth to let you know how
bad Accutane can be. It is serious and not to be taken lightly by no
means at all.
It took a year and a half for my lesions to heal after Accutane.
1 1/2 years guys.
My arm still leaks (left one)
Scars, sinus tracts you name it. I constantly battle with every
single day of my life with the reminder of Accutane what it has done
and what I did wrong.
My groin did however bounce right back into remission for a couple of
years it is back in action but no where near as bad.
I would much rather deal with this now than that hell I encountered
with the Accutane.
Accutane was like bringing to life the spots that were not active.
Prolonging their stay.
I was asked to share my story. As I mentioned above, this is what
happened to me and I was already in stage 3 at the time. Accutane is
dangerous. Look for yourself; type in Accutane and search for the
results; read them; find stories of kids as well as adults who share
their stories and sometimes journals with everyone about Accutane and
what it has done to their lives.

Accutane is seriously bad news and should not be taken lightly at all.
There are parents now trying to ban the drug because they have lost
their children from being on it,and becoming severely depressed.

I hope my story has helped,and I did not offend any of you. Not my
intentions at all. Just wanted to share my story using this evil drug
and thinking it could be the answer and the cure for HS and ended up
speeding the HS stages along further with some pretty drastic
measures to follow and haunt me for the rest of my life.

Permission given by Karen L on December 4, 2004

to use on this website.

As of October 31, 2001, 138 cases of Accutane associated suicide has been reported to the FDA. Ninety-two cases are U.S. and 46 cases are foreign. The AERS database has 2,780 reports (U.S. and foreign) of psychiatric disorders associated with Accutane, of which 445 reports are of serious depression.  There have been 216 reports of suicide, suicide attempt and suicide ideation received by the FDA in the period from 1st January 1998 to September 2000.