I am not disputing that Harvey - I am just saying that in a very small
percentage yes it can cause neurological events such as MS.  I would not and
have stated that many times have not taken the tnf drug but it is a small
risk.  That is the reason they put the huge warning on it.  It is a very
small risk but one that is there. It is a risk just like infection etc.

I wouldn't suggest anyone make this stop them from taking a tnf receptor
(heck .5% is less of a chance of getting hit by a car) but frankly the last
5 months I would have rather been hit by a car. There is a small chance.

Kelly

I have to pipe in here as I have MS and had it before I started taking
Enbrel 3 weeks after it came on the market. Both exacerbations of my MS
have been when I was not taking the Enbrel because of infections. The
first one in 2000 -- I had been off of it for 3 months straight. This
one I am having now - well, as you know I had been under tremendous
stress as well as going thru infection problems for the past year and
off and on again with the Enbrel.

So --  Enbrel in the first year had 11 cases of "demylinating"
disorders in a pool of some 88,000 people.
Below is part of a letter from the American College of  Rheumatology
from back in 2000 -
**********************************
"Eleven cases with neurologic disturbances have also been reported.
These
cases were either de novo cases (2 patients) of multiple sclerosis
(MS),
exacerbation of pre-existing MS (4 patients), 2 cases each with
encephalopathy or myelitis and two with optic neuritis and one with
ischemic
optic neuropathy.  The expected rate of MS in the RA population is
unknown.
The association is felt to be exceedingly uncommon and far less common
than
the occasional association of MS with Lupus or Sjogren's syndrome.  The
prevalence is estimated to be between 250,000 and 350,000 or 93-130
cases
per 100,000 population.  By extrapolation, between 72-104 cases of MS
should
have occurred among etanercept-treated RA patients.  Patients reported
with
demyelinating disorders differ from those with cytopenias (paragraph 1
not
here) in that the patients were younger (mean 44.2 years: range 37-56
years,
were more likely to have psoriatic arthritis or seronegative or poorly
defined RA and were less likely to have multiple comorbidities or be
treated
with combination therapy (4/11 patients were on MTX).  Although TNF has
been
implicated as a possible factor in the pathogenesis of demyelinating
disease
in humans (MS) and animal models (EAE), the medical literature also
supports
the plausibility of a TNF inhibitor causing these findings. (2,3) One
report
of 2 MS patients who were treated with infliximab failed to show any
clinical changes but was associated with worsening of improvement and
instead showed increase rates of MS flares when compared to placebo.
Thus,
it appears that demyelinating disorders may be drug class (TNF
inhibitors)
effect rather than a drug specific (etanercept) effect.
Rheumatologists
should therefore exercise caution in prescribing a TNF inhibitor to
patients
with MS or a history of optic neuritis or other demyelinating
disorders."

November, 2000
John J. Cush, MD: Robert Spiera, MD
Hotline Editors

1. Blood 81 (6): 1471-78, 1993
2. Neurology 47: 1531-34, 1996
3. Neurology 53: 457-65, 1999
**********************************

It was after this that the black box warning on enbrel came out.

I was diagnosed with MS in 1997.  My RA diagnosis was in 1996.  I
have been on Enbrel since the FDA approved it with no worsening of
symptoms.
In fact,  one MS attack I have had since I started Enbrel occurred
after
I went off of it for 2 months due to a chronic sinus infection which
caused
a low grade fever.  Infections of any variety, as well as an elevation
in
body temperature can cause an MS flare. And then the exacerbation this
year.

It took 7 years to get the correct diagnosis of MS as the symptoms can
be
the same in many other diseases including Fibromyalgia Syndrome, Lyme
Disease and Lupus just to name a few.  MS is mostly a diagnosis of
exclusion
as there is no one test that says yes, you have it.  Even an MRI is
only
used in conjunction with other tests and symptoms to confirm an MS
diagnosis.  In addition, it is not unusual for one to have had mild MS
symptoms in their past ignored by both themselves and their doctors
because
of the broadness of their meaning.  In retrospect, my doctors think I
had
symptoms of MS back in my 20's but the symptoms were not severe enough
nor
consistent enough to scream out to anyone "MS" until 20 years later.
Some neurological symptoms can occur with many different drugs.
Sudafed, for example, will cause
difficulty in urination as do many anti-depressants.  Numbness in the
extremities is a common symptom in FMS, a disease that occurs with some
regularity secondary to RA and other auto-immune diseases.  My mom got
temors from her heart medication.  RA itself can cause numbness and
tremors if there is disk damage in the neck.  So these symptoms alone
do
not mean that someone is getting "MS type symptoms".
The symptoms of MS are broad and cover just about every body system
depending on where the damage is.  If the people who are having these
symptoms are on no other drug than Enbrel, it is important for them to
notify their doctor so that appropriate testing can be done to confirm
if
this is MS or not.  An MRI will show  enhancing lesions in the brain or
on
the spinal cord if MS could be the cause.  Contrast can show the
approximate
age of a lesion. Not exactly but if it light's up from the contrast the
general consensus is that it's
newer activity.   If there are older lesions that show up then it may
be
that the demylinating activity was there prior to Enbrel and this was
the
first time you felt the effects of it.  That's how it was when I had my
MRI.
There were signs of old MS activity but nothing I ever was terribly
aware
of.  Of course, only a biopsy of the lesion will tell for sure,
something
that's usually saved until autopsy.
**********************************

I know how much Enbrel means to us....believe me with both RA and MS I
walk ()so to speak!)
a fine line in taking it. When the warnings first came out, I
immediately
sent the info to my neurologist, Dr. Shuster at the Mayo Clinic
Jacksonville.  Her first
reaction was that I should quit taking it but after she looked into it
more
she decided that there was not enough information to conclude that the
Enbrel was the "cause" of the neuro problems the patients were
experiencing.

If you read the press release which I have posted, you will notice that
it
talks about  11 cases of  "demylinating" episodes. A demylinating
episode is
where the myelin sheath that surrounds the nerve is missing or has
disintegration.  Lyme Disease, MS, neuro syphilis, autoimmune thyroid
and
other diseases  can cause this to happen.  Dr. Shuster said that
the incidence of this in the general population is about 1-1000.  With
88,000 people  taking Enbrel and only 11 cases of demylination,
this is far below what one would expect if the drug itself were causing
it.  Dr. Shuster said
if I start having closer or stronger attacks than one every 2 years )
which is
considered good control with typical MS drugs), then we would look at
the drug as a possible
cause. I had two attacks in ten years.Six (?) of those years I was on
Enbrel.  And
I'm still on enbrel today.  Well, I've been off of it for almost a year
now.    It's important to point out
that having "symptoms" and having an active "exacerbation' are two
different
things.

In the MS research world, there were studies done with monoclonal
antibodies
to TNFa which is basically what Remicade is as well as some of the
other TNFa's are.
When Remicade was used in an MS trial, these studies showed an increase
of lesions (signs of
demylination) on the MRI after 6 weeks of treatment.  There was no
increase in symptoms or increase
in disability in the patients but the study was abruptly stopped due to
the
MRI results.

Before I started Enbrel I was assured by the researches at Immunex that
Enbrel was not a monoclonal antibody to TNFa.  I had an MRI at 6 weeks,
6
months, 1 year and in Sept 2000, just shy of the 2 year anniversary I
had an
MS attack where I showed a new lesion on my spinal cord in the neck.
Since
then I have had  more MRI's with no new lesions.  Until this last
month, Feb
2006 all MRI's showed no new activity. In the past year there are some
and this
has been the year of infection after infection and Enbrel more off than
on.
Things that can bring on an MS Attack:  infection, raise in body
temperature, stress, problems with your teeth. Things that were going
on
just before that 2000 MS attack:  I had a 4 month sinus infection and
two UTI's.
I had STOPPED the Enbrel for a week just before the first new MS
symptoms
started up. About a month later I had a full blown new exacerbation.
Things going
on in 2006 - 5 month sinus infection on IV abx, 4 UTI's, one abscess
tooth and the
stress of my mother passing and an angry brother. Off Enbrel more than
on.
Enbrel has helped my MS symptoms more than anything else. And I'm ok
with only
having 2 attack in 10 years. Well not totally ok - I want to walk alone
again.
But it could have been worse.

In retrospect, there was MS like activity on my MRI's prior to my
diagnosis of MS.
There were symptoms back to my childhood that something was amiss. I
was told
I basically had benign MS or MS so quiet it didn't raise any red flags
until I was in my
40's. Same with the RA and low IGG which didn't show up till even
later. Cause and effect?
Can't say that. What I can say is I do have MS now and personally, for
me, Enbrel has
been a good thing. I was taking MTX when I had my first noticeable MS
attack but does that
mean that MTX caused it? It's not an easy thing to discern the
drug/side effect thing when we
take so many different drugs.

Just my 100 pennies worth.......Cyberhugs, DianeW