forum on our bulletin board devoted to discussion about retinoids.
Quite a lot of good information has accumulated there, and it's also a
good place to ask your questions.
If you're seriously considering taking a retinoid,
you'll also definitely need to involve your doctor.
are synthetic derivatives of Vitamin A and are taken orally. These
drugs have been very successful in treating severe cases of ichthyosis.
The two most common retinoids are Accutane (isotretinoin) and Soriatane (acetretin).
These drugs are available only by prescription, and your treatment must be
carefully monitored by a dermatologist experienced in their use.
Below are links to some
information on the web about Accutane and Soriatane (not
even close to complete; use your favorite search engine and search on
"Accutane" or "Soriatane" to see more). Please
keep in mind that most of this information is directed at people who would
take Accutane or Soriatane for acne (or something other than ichthyosis).
This means these people would generally be taking Accutane in lower doses,
for shorter periods of time, than someone with ichthyosis. While
hearing about other people's experience with Accutane is an important part
of your education about Accutane and your decision about whether you want
to take Accutane, you absolutely must have professional medical advice
from a doctor familiar with Accutane or Soriatane.
I came across your website and thought
I'd share my experience with accutane, even though it was for acne not
ichthyosis. My acne began when I was aroung 16, but it was only minor at
that time. After I turned twenty, it worsened and continued to progress.
When I was 31, I chose to pursue accutane treatment. Here's a synopsis
of my experiences:
I began accutane treatment in November 1997 and completed in April 1998.
I experienced a minor outbreak (normal) two to three weeks after
treatment began. Thereafter, my acne slowly became non-existant.
However, the normal symptoms of accutane manifested themselves
thereafter. I experienced a general red hue to my skin which became dry,
cracked and bleeding lips, some
hair loss and muscle/joint aches. Most of these symptoms lessened within
one month of ending the treatment.
It has now been ten months since my treatment ended. My acne is still
completely gone from my chest and back. I do experience minor acne-like
bumps on my face on rare occassions, but these are hardly noticable and
they dissappear within a day or two. My experiences has showed that it
is a useful medicine, but I do have concerns regarding the medical
professions responses to some long-term effect and questions.
My hair line has receded about 1/2" on my forehead; since I had
such a low hair line before (Eddie Munster?), no one notices. I however
notice it and also that my hair is still dry and fine, not coarse at it
was before treatment. My hair line is 'jagged' and the lost hair has not
returned as I was informed it would (from two physicians and my
deratologist) within 6 months. I do not have any hair loss in my family,
so it seems quite plausible accutane is the culprit. I have encountered
posted on the web with the same experience; one stated that her hair
started growing back about a year after her treatment ended.
I also experienced allergy-like sinus problems beginning at the end of
my treatment. Coincidentally, my eyes (especially the right eye) began
experiencing redness and mucous-induced blurred vision. No allergy
medications have had any effect including steroid shots. Nothing like
this has ever been encountered in my family, so once again accutane
seems the culprit.
Lesser residual symptoms included dry-skin wheals appearing on several
areas of my body over a two-month period around three to four months
after treatment. These slowly disappeared and have not recurred. My
muscle/joint aches have persisted but not too severe. I also experienced
toenail fungus which may or may not have been caused by the accutane
My concern has been with the general medical profession's attitude that
these enduring symptoms are not related to the accutane treatment; this
observation is common from the web responses with one person actually
persuing it to specialists in Boston who conclude also that accutane is
the cause. With the innumerable experiences that I have come across on
the web stating the same or very similar symptoms post-accutane, I think
it bears sufficicient correlation to warrant professional and/or even
FDA investigation. I have seen several physicians, had blood tests and
physicals, and tried numerous
shots/eyedrops/pills etc and have not been able to diagnose and resolve
these questions. My tests have returned inconclusive other than my blood
is fine with no sign of liver or kidney (or other) dysfunction.
I took Accutane back in 1982 when it was
still in the experimental stage. Within days of starting the drug my
skin looked 95% better than it had ever looked in my life. (I have
severe EHK, by the way). Within a few weeks 95% of my hair was gone -
that was interesting. I took Accutane for about 4 years, unfortunately I
forget the dosage but it wasn't refined the way it is today.
Back then doctor's monitored the blood on a semi-weekly basis and I had
my back x-rayed 3 times a year to check for calcium deposits.
Eventually, it came down to did I want my skin to look good or did I
want my health? I developed bone spurs on my spine and the blistering
and tearing of my skin became almost unbearable. The reason for this is
that underneath EHK is *not* normal, healthy skin. Ichthyosis is a
disorder of the entire skin, as noted on your website.
Even on Accutane my skin never looked normal. One of the telling points
of EHK is the redness. I had clear, smooth and REALLY PINK skin!
Anyone considering Accutane should be told that it does not fix severe
ichthyosis. It makes it look better but that's all. The top layer of
skin with EHK is thinner than normal and when it's completely clear it's
extremely fragile. I had to stop wearing jeans because the fabric just
tore my skin to
Read all the literature and make sure you understand the implications of
the side effects. What I was told would be minor back pain (the bone
spurs) turned into a condition where, on occasion, I cannot turn over in
bed without pain and difficulty and walking, standing, in fact any
Look before you leap.