cfs/fibromyalgia/accutane 
Author Message
 cfs/fibromyalgia/accutane

Quote:
>David Nye

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.

Quote:
>he will deserve the credit.

If you publish a paper on this feel free to add my name to it, after
yours.  :-)  That would be neat.

Quote:
>Maybe this will get more docs to read this newsgroup, too!

I think a moderated conference would fix things.  On the other hand
initially I was worried about intruding on this doctors conference,
until I saw all the crackpot messages being posted and replied to.  Then
I ceased to worry. :-)

Quote:
>Interestingly, she had a couple of nights of poor sleep after dropping
>the dose, but didn't suffer any increased pain the next day, which is
>most unusual for her.

A similar thing happened to me too.  Before I started the accutane
getting up early(only 5hrs sleep) would increase my pain by a whopping
factor of 10!  After a few months on the accutane I was surprised to
find this increase in pain dropped to a factor of 2 or 3, and after 6-7
months there was either no increase or only a minor one.

Quote:
>You were able to stop the accutane after several months and your
>symptoms didn't come back?

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.

During the 2 months that I was off the accutane I had a lot more energy,
but I thought I could still use a little more energy.  So I took tenuate
(an amphetamine) and it caused an increase in the pain that got much
worse the longer I took it(4 weeks).  Got better when I stopped the
tenuate.  At its peak the pain dwarfed the pain that I mentioned above
(were 1500mg naproxen and 40mg toradol was not very effective).

Observation: The toradol seems far more effective while I'm on the
accutane.  More then would be accounted for by the less pain it has to
counter.  The naproxen works equily well on or off the accutane.

Quote:
>Hmm.  Doubtful.  It turns out that there isn't really any inflammation
>in fibromyalgia to speak of, it just feels that way.

I think in my case it is inflammation.  I take naproxen and toradol.
The naproxen distinctly takes away a feeling of what I think is
inflammation(and also helps fix a feeling of weakness).  Were the
toradol alone doesn't touch that feeling nor the weakness, but does a
much better job on the pain.  Which fits the fact that toradol has
little anti-inflammatory effect.

It just thought of something.  If the accutane is speeding up the
maturation, the death and the replacement of inflamed cells, and
viruses reproduce in cells(eh?), besides the direct inflammation/pain
fixing that would also kill off a lot of viruses and slow the over all
virus population reproduction rate, generally making me healthier.  Or
am I totally wrong here?

Also if accutane works on inflamed cells wouldn't the naproxen(an
anti-inflammatory) inhibit the action of the accutane?  I stop taking
(except rarely) the naproxen and toradol a month ago because of an ulcer
(I can't tolerate cytotec).  That may partly account for why I now feel
better on 10mg of accutane then I felt on the 40mg 3 months ago.

I really should visit a medical library and read up on this stuff.  Have
you read up on accutane?

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).  If you like I can mail you the complete description that I
typed out for my doctor.

Have any other patients had success with the accutane?
--
Canada Remote Systems  - Toronto, Ontario
World's Largest PCBOARD System - 416-629-7000/629-7044



Sat, 10 Jun 1995 01:49:58 GMT
 cfs/fibromyalgia/accutane
[reply to "chris]

Quote:
>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 ({*filter*}
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.

Quote:
>If you like I can mail you the complete description that I typed out

for my doctor.

Please.

David Nye



Sun, 11 Jun 1995 02:00:41 GMT
 cfs/fibromyalgia/accutane

Quote:

>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
>better on 10mg of accutane then I felt on the 40mg 3 months ago.

>I really should visit a medical library and read up on this stuff.  Have
>you read up on accutane?

If you read up on it like I did you would not want to stay on the stuff for
long periods.  The list of side effects is frightening, and what's more, so of
them have been known to become permanent.  The PDR says that it's unknown how
it works.

You mentioned in a prior post that before accutane you were on lots of Vitamin
A.  I forget, did you find any help from that?

Quote:
>>Hmm.  Doubtful.  It turns out that there isn't really any inflammation
>>in fibromyalgia to speak of, it just feels that way.

>I think in my case it is inflammation.  I take naproxen and toradol.
>The naproxen distinctly takes away a feeling of what I think is
>inflammation(and also helps fix a feeling of weakness).  Were the
>toradol alone doesn't touch that feeling nor the weakness, but does a
>much better job on the pain.  Which fits the fact that toradol has
>little anti-inflammatory effect.

Studies have shown that anti-inflammatories do little to help fibromyalgia
patients.  I've tried naproxen and others and find no change.  I wonder if
instead the accutane is affecting glands which control hormones?  There are
some who believe that fibromyalgia is hormone related.

Mark London



Mon, 12 Jun 1995 00:14:30 GMT
 
 [ 3 post ] 

 Relevant Pages 

1. cfs/fibromyalgia+accutane

2. Accutane for CFS

3. Acutane, Fibromyalgia Syndrome and CFS

4. Acutane, Fibromyalgia Syndrome and CFS

5. Fibromyalgia, CFS and sleep levels

6. Accutane and cortisone for CFS/FMS

7. Accutane;CFS;Ampetamines

8. CFS, fibromyalgia usually another illness.

9. Fibromyalgia, CFS, Alzheimers

10. CFS, Fibromyalgia, Rheumatoid Arthritis:

11. The cause of CFS & fibromyalgia


 
Powered by phpBB® Forum Software