From: nyeda@cnsvax.uwec.edu (David Nye)
Newsgroups: sci.med
Subject: Re: cfs/fibromyalgia/accutane
Date: 22 Dec 92 12:00:41 -0600
Organization: University of Wisconsin Eau Claire

[reply to "chris]
 
>I'm glad you have found my discovery helpful for your patients.  It was
>a huge vast help to me and I thought others who have what I have should
>know about it...I didn't want to comment on reoccurrence of symptoms in
>my earlier messages until I'd given it enough time to be sure.  Now I
>have been back on the accutane at 10mg/day for 3 weeks after being off
>it for 2 months.  And I must say its just amazing how much better I feel
>back on the accutane.  When I went off the accutane the first thing I
>noticed was a huge improvement in my fatigue level then after the first
>week there was a slow increase in pain, general sickness feeling, and to
>a lesser degree fatigue.  By the end of two months the pain and the
>feeling sick got quite bad(1500mg/naproxen SR and 40mg/toradol all at
>once and I still spent most of my day in bed on my bad days[1 out of 3
>days]).
 
>I restarted the accutane 3 weeks ago at a lower dose of 10mg(was taking
>40mg before I stopped) and within 12 hrs was feeling slightly better,
>and the 2nd day I felt much better.  I now feel less sick, less pain,
>but more fatigued.  A good trade I think.  I have constantly felt much
>better the entire past 3 weeks on the accutane.  I'm a lot less fatigued
>now on the 10mg/day then I was on the 40mg/day.  40mg/80mg was necessary
>when I was much sicker, now 10mg is fine.
 
>I read the reposting of your description of fibromyalgia and I'm not
>sure that's what I have.  There is a lot in common, but there are
>several significant differences.  No tender points, no morning stiffness
>(its better then if anything), no extra pain when sleep is disturbed,
>but getting up after only 5 hrs sleep would cause the pain to jump up
>by a factor of 10 (extreme pain when I was very sick, now over a year
>ago).  I also had several symptoms not listed like pain in lymph nodes
>in neck, swollen throat, and brain damage or impairment(got much better
>as I recovered).
 
Myalgic encephalomyelitis appears to be used outside the US for what we
here call chronic fatigue syndrome.  There are many similarities between
CFS and fibromyalgia.  Some investigators feel these are different
clinical presentations of the same underlying disease process.  The same
treatment often works for both.  I have now had a chance to try Accutane
on four other patients and it works beautifully, additional evidence I
think that these two conditions have a common pathophysiology.  Everyone
has found it superior to other therapies tried and none have had
significant side effects except for dry lips which everyone seems to
get.  Most people seem to need 40 mgs. twice a day except for one
patient who only needs 10 mgs. a day.  Now I've got to get off my duff
and write up a case report.  I want to get basic researchers interested
in figuring out how accutane works.  If they can identify a mechanism of
action, it should lead us to a better understanding of both CFS and
fibromyalgia.
 
Although accutane has noticeably fewer side effects than amitriptyline,
it does have some potentially serious ones which temper my enthusiasm
slightly, and it is awfully expensive, around $150/month here.  The
biggest problem is that it causes a very high incidence of birth defects
if a woman gets pregnant on it, so it can't be used in women of
childbearing age who are not using very reliable contraception (oral
contraceptives may not be good enough).  It may also cause liver
problems or an elevation of triglycerides, so one needs to follow these
every couple of weeks, at least initially.  It may also cause vision
problems which can be permanent if the drug is not stopped soon enough,
but usually the liver, lipid, and eye problems are all reversible when
the drug is stopped.
 
>If you like I can mail you the complete description that I typed out
for my doctor.
 
Please.

David Nye
nyeda@cnsvax.uwec.edu
Newsgroups: sci.med