I was just going to say the same thing.  Also that side effect needs to be
told about.  For all you know others might be having the same thing, or it
might be a sign of toxicity or something.  You need to tell them even if you
can ride it out it may be others cannot safely ride it out.

Just because the itching appears doesn't mean that it won't go away.  Look
at Kineret - everyone got the rash at a certain point and it does go away.
They do need to know that though.

By you not following the protocol they risk the FDA pulling the test trial
results.  Just think where our meds we have would be if test trial results
were pulled and the meds didn't get approved.

Harv for your sake and theirs you need to be honest, ask about med changes
before you do it and follow their protocol.  If you think you can't do it
then please go back to your rd and find other options.

When Gloria volunteered for Enbrel and I volunteered for my drug trials the
results were closely watched.  Gloria helped with enbrel and without her
trials perhaps it would never have gotten off the ground.  Mine worked so
well but between the economic expenses of the trial and the fact that so
many others were in the same ballpark the study was dropped.  Then I was in
a partially paid trial for rituxan.  This is over now but again helped to
make the province I am in agree to pay in part for the med.  This is huge!

It isn't just for their sake but for yours.  They need to know that the
shingles was getting worse with the extra prednisone and that the rash has
continued.  Please don't hold back information.

I do care as well.  I am glad to hear though that you think it is working a
little.  The results I have seen from other sources says it is one of the
promising ones. We still need some promising ones.  There are still people
that the meds we have now don't work on or stop working for them.  What you
are doing is very important to them but also hopefully important to your
choices.  More important though I worry that a change from the protocol or a
hidden side effect (that doesn't necessarily kick you off the program - they
just need to monitor) could be dangerous to you,

Kelly

From one who knows drug trials very well, Harve.  In a trial, you are
volunteering your body to test their drug, and the FDA is watching their
every move.  It HAS to be a controlled trial so certain protocols are set
up.  If participants don't follow the protocol, to the letter, the results
of the trial will be invalidated.  That can be disastrous to all involved in
the trial and to all the patients waiting for a new drug for their disease.
Drug companies spend billions of dollars investigating new drugs and they
have to trust he results of any clinical trials they run.  You are not in
this trial for yourself, as much as I understand your own personal reason
for being in the trial, your body belongs to the drug company and their
trial.  Harve, think about what the outcome can be if you don't follow the
protocol.  They can and will bump you out if you continue to violate the
rules of the trial, then where will you be?  Just be good, dear friend,  and
play fair with them and something will be learned from this trial, perhaps
something very good that will help you and many, many others.

Because I care,
Gloria

Harv.

I wish you all the best with your new medication.
Don't let the medical terrorists get to you. Some of them seem to
delight in running other people's lives.

Peter

Wellllll,  I know what you mean but I do not think so in this case.  My RD
has already told them that I only take enough medicine to control what I
have and we can not act that way when dealing with a drug test program.
Most people take exactly what they are told to take and thats it.
  I would too if we were trying to cure something.  I am sorry to say that
they are not going to cure a dam thing.    Not when Enbrel just passed 1.3
billion this year.
  I will say that I did not get the kick of well being with Enbrel.  That
may not be fair to say that but it is the way I feel.   Maybe getting chewed
out really well was all the kick I am going to get.
LOLOL
Harv

Harv.

I wish you all the best with your new medication.
Don't let the medical terrorists get to you. Some of them seem to
delight in running other people's lives.

Peter

Ohhh, I keep getting into so much trouble with the program but I do feel
better.  A person is not suppose to change anything or take any new medicine
or change the amounts of medicine a person takes.   They want to know what
there medicine is doing with my body and nothing else.

  Ok,,,,ok,,, I understand that but I have this catch 22 that I deal
with,,,,, prednisone.  A person can not take 10 mg or more and be in the
program.   At the very start I was living on pred. and Naprosyn while I
lived through 30 days of getting Enbril out of my system.  I was taking 10
mg at the very start....only my RD kept me in.   Then,,,, when I was feeling
better,,, I lowered the pred to 7.5 because the more pred I take the worse
my shingles are.   The lady got soooo mad at me that I was nearly washed out
again  because I changed an amount of anything I take.  I can take being
chewed out as well as the next guy but she went on and on and on.   I
finally put my hand up and said,,,, I fully understand your point and
nothing I could say would change the fact that I changed the amount of
something I take,,,, can we move on now?
    The shots I take are a pretty big shot,,,,,two of them.   It seemed to
me that she gave them to me a little fast which hurts like hell.   I asked
her when I was going to be able to give myself my shots or shot.  Her
eyebrows went up and I thought she was going to start in on me again....LOL
I just smiled at her  and she said,,,, soon.
  I know that they are building up the medicine in my system but what I
have not told them,,,,,,,, is that I have started to itch in my lower back
like I did with Remicade.   I think it will be OK when I cut back to one
shot every two weeks.   So it goes.
Harv

Harvey,
How are you doing?  Do you think the med is kicking in?  I think it has been
a few weeks hasn't it?

Thinking of you.

Kelly