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Medical Forum / Diseases and Disorders / Alzheimer's / April 2008

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Genuine wonder drug for Alzheimer's, hope.

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MikeHi@anon.co.uk - 22 Apr 2008 17:48 GMT
My wife entered a care home last year and I lurk here while doing most
of my research and posting for another medical topic/support group.
But arriving here today I’ve been surprised to see there has been no
mention of what could be a remarkable new treatment for Alzheimer’s,
publicised in the UK only a few weeks ago, and which I’ve since been
chasing up here. There is some independent assessment that this may
turn out to be genuine. See below. (The ‘New Scientist’, is a much
respected UK journal.)

Here are the main references as I’ve found them:

http://www.sciencedaily.com/releases/2008/01/080109091102.htm
Excerpt:
The new study documents a dramatic and unprecedented therapeutic
effect in an Alzheimer’s patient: improvement within minutes following
delivery of perispinal etanercept, which is etanercept given by
injection in the spine. Etanercept (trade name Enbrel) binds and
inactivates excess TNF. Etanercept is FDA approved to treat a number
of immune-mediated disorders and is used off label in the study.

http://tiny.cc/KnV6Y   New Scientist’s views.
Excerpt:
‘So if you have read about a "miracle" new treatment for Alzheimer's
disease and greeted the story with more than just healthy scepticism,
it would be understandable…….
….‘In this case, the excitement might just be justified.’

http://www.medscape.com/viewarticle/568812
Excerpt:
Sue Griffin, PhD, director of research at the Donald W. Reynolds
Institute on Aging at the University of Arkansas for Medical Sciences,
in Little Rock, said the findings by Dr. Tobinick and colleagues are
unprecedented and warrant immediate further investigation.
Considered a pioneer in the field of neuroinflammation, Dr. Griffin
was the first to describe the link between cytokine overexpression in
the brain and AD in a landmark study published in 1989.
Dr. Griffin said she personally witnessed perispinal etanercept
therapy in several of Dr. Tobinick's patients and was "amazed."
"I must admit I was skeptical at first. So I went down to watch the
procedure and to speak with both the patients and their families
before and after treatment. It was truly one of the most remarkable
things I've ever seen," said Dr. Griffin.

http://www.tobinick.com/   Base camp

I have contacted a Professor of Neurological Science in the UK who
states that he’s been trying to get the drug for a year. If the
treatment proves to be effective as claimed I hope this will quickly
change. No medical challenge can surpass, surely, that of enabling
wonderful people to reclaim some faculties and allow them to be, and
be seen to be by loved ones, as they once were, even if it may be only
a partial restoration.

Kind regards to all
MikeHi
Alan Meyer - 23 Apr 2008 02:12 GMT
> My wife entered a care home last year and I lurk here while doing most
> of my research and posting for another medical topic/support group.
[quoted text clipped - 4 lines]
> turn out to be genuine. See below. (The 'New Scientist', is a much
> respected UK journal.)
...
> I have contacted a Professor of Neurological Science in the UK who
> states that he's been trying to get the drug for a year. If the
[quoted text clipped - 3 lines]
> be seen to be by loved ones, as they once were, even if it may be only
> a partial restoration.

Hi Mike,

This is Alan Meyer from a.s.c.p.

I saw the press release for this.  It was mentioned in the past in this
group at http://tinyurl.com/5g3a95 but I haven't seen anything
about it since.

People in this group seem to me to be somewhat jaded by these
kinds of reports.  I think that, psychologically, it's very difficult
to read about a treatment that might work but is not available to
the public.  In this particular case, you can't get the drug for your
loved ones, and there aren't even any clinical trials available to
enroll in.  The drug might not even work, since there was only
one "pilot study" with 15 patients, and with very sparse reporting
of results.  The most spectacular report was a study of just one
man (presumably one of the 15, and presumably the one who
had the most dramatic perceived response.)

So I think people may be reluctant to get any hopes up at this
time.

I just did some searching in PubMed and found a reference to
this article: http://www.medscape.com/viewarticle/530141.  It's
a pretty good article that says the study of etanercept should be
followed up.  We don't know yet if it really works, but the ideas
involved are thought by the Medscape doctors to be worth
pursuing.

Unfortunately, so far, there don't seem to be any reports from
anyone except Tobinick (a doctor with stock in the company that
markets etanercept) and his colleagues.  One of his reports
appeared in http://www.medscape.com/viewarticle/529176.

His other report appears in a journal for which I couldn't find
a free copy on the web.

If you get any more information, please pass it along to us.

   Alan
Bob&Linda - 23 Apr 2008 04:04 GMT
> <Mik...@anon.co.uk> wrote in message
>
[quoted text clipped - 59 lines]
>
> - Show quoted text -

For a bit of controversy check out Alzheimer's Association message
board:
http://alzheimers.infopop.cc/eve/forums?a=tpc&s=387101241&f=762104261&m=40810642
72&r=3391080892#3391080892


I have been following this and Dr. Tobinick's "patented" technique for
my wife 51, who is severe AD now.
My opinion is that the patents will be invalidated. The sooner the
better.
I got a local doctor to do the injections which were quick and
painless. Then lie her down head low for 10 minutes.
Read the 2 Tobinick papers in the Journal of Neuroinflammation and
print them for your doctor. All he needs to know is in there.
Linda has improved and we have had the 3rd weekly shot and will
continue.
This needs weekly shots, but it beats diabeties with daily shots.
For a before/after of my wife see her Youtube:
http://www.youtube.com/watch?v=JdSsdxzrjMk
Please leave some comments on the YouTube if this helped.
Enbrel has some dangers that need to be discussed with your doctor. In
our case it was be shot or hung anyway so we took a chance.
Good Luck
Bob Lee
MikeHi@anon.co.uk - 23 Apr 2008 13:46 GMT
(with my (MikeHi) comments:
I had written
.../loads of snip)
>> > But arriving here today I've been surprised to see there has been no
>> > mention of what could be a remarkable new treatment for Alzheimer's,
>> > publicised in the UK only a few weeks ago, and which I've since been
>> > chasing up here. There is some independent assessment that this may
>> > turn out to be genuine. See below. (The 'New Scientist', is a much
>> > respected UK journal.)

/snips

>> People in this group seem to me to be somewhat jaded by these
>> kinds of reports.  I think that, psychologically, it's very difficult
[quoted text clipped - 9 lines]
>> So I think people may be reluctant to get any hopes up at this
>> time.

Alan, all your reservations normally make sense. But it was, among
other things,  the investigation and cautious thumbs up by New
Scientist, the fact the Prof I found has been chasing the treatment
for a year, the fact that the Alzheimer's Society here sounded excited
rather than very sceptical and thought swift follow ups were required
(as did Medscape) -plus the well- known research specialist from the
Aging society witnessed at first hand the before and after.  After
that, with a known drug, how much is there to lose for a loved person
otherwise doomed to become a vegetable?

(Lots of snip and i know from a.s.p.c that Alan's always worth reading
-he's above in the thread)

>> If you get any more information, please pass it along to us.

WOW- Alan, we certainly got further information from Bob, re Linda:

>I have been following this and Dr. Tobinick's "patented" technique for
>my wife 51, who is severe AD now.
[quoted text clipped - 14 lines]
>Good Luck
>Bob Lee

Bob - thank you so much. I could not have had a more exciting and
emotive reply.What a tremendous step - and your making it available to
be seen. I put a comment on your Youtube site. Wonderful stuff - (but
my wife goes barmy now if I touch her face so I think a different
stimulus to nose-pulling may be needed for my safety!). I know just
the perfect doc for the treatment so I'm now spending all my time
seeing if he will agree.  I'm practicing the video bit  on my camera
for the first time too.  Love and great wishes for Linda and you and
your family. And once more heartfelt thanks.
Alan Meyer - 23 Apr 2008 17:57 GMT
http://www.youtube.com/watch?v=JdSsdxzrjMk

That was fascinating Bob.  Thank you very much for making that
video.

Seeing these things on YouTube gives us a kind of information
that we can't get by reading studies (and vice versa).

My impression is that the etanercept may have done some good,
though we're not looking at a miracle cure here.  It's hard to know.

Best of luck to you and Linda.

   Alan
Adelle - 23 Apr 2008 20:26 GMT
> http://www.youtube.com/watch?v=JdSsdxzrjMk
>
[quoted text clipped - 8 lines]
>
> Best of luck to you and Linda.

I take etanercept for Rheumatoid Arthritis. I wonder whether it works in
some people who have some sort of auto-immune issue in addition to some form
of dementia, the same way clearing an infection improves mental status.

Perhaps just dealing with the body's immune system attacking itself worsens
the dementia the same way people decompensate when they have an infection or
virus. In that case, the improvement in overall health by controlling the
over active immune response would improve mental status the same way
resolving an infection improves mental status.

Adelle
Alan Meyer - 25 Apr 2008 20:58 GMT
> ...
> I take etanercept for Rheumatoid Arthritis. I wonder whether it
> works in some people who have some sort of auto-immune issue in
> addition to some form of dementia, the same way clearing an
> infection improves mental status.
> ...

This article gives a technical explanation of how the drug is
thought to work: http://www.medscape.com/viewarticle/530141.

If I can boil it down correctly, it appears that the drug acts
against certain molecules in the body that create inflammation.
It is thought that these particular molecules ("tumor necrosis
factor", or "TNF") occur in abnormal amounts in the brains of AD
patients.

TNF is a part of the immune system mechanisms.  It can kill cells
and is used by the body, for example, to kill cancer cells.  It
can also stimulate inflammation - which in turn can damage or
kill more cells.

So I think the answser is probably that, Yes, you're right that
the drug's role in modifying the immune system response is part
or most of what makes it useful in AD.  As for the details of how
it affects brains - I think we'll probably have to wait for more
research.

   Alan
 
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