Subject: Re: cladribine

From: Jackie Ferguson <[email-masked]>
Date: Mon, 21 Oct 1996 20:57:02 -0400

Nora Holtrust wrote:
> 
> Hi everybody,
> 
> I read a little while ago in de newsgroup a lot of new research. I have
> myself cp ms and there is not much research for our type of ms. I read
> however about cladribine, that had been tested for cp ms. Here, in
> Holland, we are most of the time a few years behind the USA. So, I was
> wondering, does anybody in the States know something about this drug?
> Doe you have any personal experience with it?
> If anybody can help me with this, my personal email nr. is
> [email-masked]
> 
> Thank you in advance
> 
> Nora
************************************************************************
Nora,

RE: Your questions about cladribine.

I took cladribine from August 1995 though February 1996.  Cladribine
(also called 2CdA [adenochloradeonosine) is a powerful drug which is
approved by the Food & Drug Administration for hairy cell leukemia and
certain other types of cancer).  So it is already on the market.  The
drug works by actually inhibiting the growth of certain white blood
cells -- T4 & T8 lymphocytes -- (which are implicated in the
demyelinating process of MS).  So a pilot study was done in La Jolla,
CA. on a small number of CPMS (chronic progressive MS) patients.  Most
of those who took the drug stabilized ... some even improved.  Those who
took placebos either got worse or didn't deteriorate further.  A
multi-center trial is underway in the US (and I think Canada) with a far
larger number of people.  It's a 2 or 3 year study.  
Being a nurse, I realized the drug was available ... the trick was to
find a neurologist who would order it (I was deteriorating and that made
me a good candidate for the drug!)

I took the drug IV in my doctors office 5 days a week, once a month, for
a total of 6 months.  I had 30 doses in all.

I didn't feel any side effects ... no nausea, no vomiting, no hair loss
... I felt fine throughout the treatments.  It is a high powered drug,
and potentially it can suppress the immune system so much that it is
"life-threatenning".  But they monitor your blood counts carefully, and
delayed treatment on a few occasions because my counts were too low.

The doctors and I think it arrested my disease at present.  I also am
exercising daily to strengthen & stretch muscles.  So overall, I'm much
improved... my gait is better (I was pretty much in a wheelchair)...
I'm glad I did it.
But there are no guarantees ... not even a definitive study that the
drug actually works in MS!  But I do believe in medical miracles ... but
that involves a willingness to take risks ... I had to sign a consent
that said that they had absolutely no idea of the long term risks of
cladribine.  I reasoned it, yes ... but I knew where I was heading and I
was willing to assume the risk versus possible benefit.  The drug is
also VERY expensive ... something like $500.00 per dose!

Also, there is additional work being done for people with CPMS.  The
Avonex drug company is testing it on CPMS pts. (It was FDA approved for
relapsing/remitting MS.)

I hope I answered your questions.

There are many people, not just in the USA, who have taken cladribine as
I did. 

How are you doing?  If I can provide more information, please let me
know.
                       2
Jackie Ferguson, RN, MS
[email-masked]