Subject: Linomide

From: Fran Kanterman <[email-masked]>
Date: Sun, 3 Nov 1996 09:34:05 -0500

Tamar -

  It's nice to meet someone else who will be going through the linomide
 trial.
  It sounds like a very promising drug. Were you a participant in the small
 Israeli trial written up by Dr. Abramsky?

  I tried to send this to you privately rather than through the list
because
 it
  will be long, and people on the list have objected to people sending long
  personal messages through the list, but that did not work. You can email
 me
  privately at [email-masked] if you would like more information.

  I think the trial I am in is the one you are thinking about. There are
  about 900 people at 30 study centers in this trial - about 30 people in
 the
  trial at the center I go to.

  The trial I am in is for secondary progressive ms. I do not know all of
 the
  selection criteria, but I know you had to start out with
  relapsing/remitting ms and then become secondary progressive. Also, you
  have to be within a certain range on the disability score test - I don't
  know exactly what the range is, but my score is 5.5

  To start the trial you have a physical exam from two doctors, an EKG,
 blood
  tests, and a long MRI. The results of these tests are reviewed, and then
  sometime within the next 30 to 60 days you start the trial if the tests
  came out OK. In my case I had a slight glitch - something in my blood
test
  showed an elevated reading that can be associated with lupus. So I had to
  go to a rheumatologist who cleared me for the test by confirming that I
do
  not have lupus and that the elevated reading was due to some medications
I
  take. Once you are finally accepted into the trial, you have another MRI
  and then start the pills. There are numerous MRIs throughout the trial.
 The
  trial lasts for three years.

  Three out of four study participants get the real drug, with three
  different levels of the drug being tested. So you have a 75% chance of
  getting the drug.

  I am not such an experienced Internet user but I have collected a lot of
  bookmarks to ms sites, which I will try to send you with another
  message if you will send me a private email address so I don't clog up
the
 list.

  This is not the first study I have been in. I was in the Cop 1 study - I
  left that study in August 1995 because the drug was no longer working on
  me.

  Where do you live in Israel? I have been to Israel a few times and am
  thinking of another trip in April.

  Good luck getting onto the study. I have heard from one person that the
  trial at Georgetown University is very slow in getting started. When are
  things scheduled to start in Israel? Also, there was a report in the
  Jerusalem Post last May (or around that time) that said linomide might be
  approved in Israel within one or two years. Do you know anything about
  that?

  I would be glad to hear from you.

  Fran Kanterman