Joined: 09 Dec 2003 Posts: 2 Location: New Brunswick, Canada
Looking For Someone On the Abc's Posted: 12-09-03 22:41pm
Hi,
i'm new here... Just stumbled in thru
google. I have had ms since march of 1998
and i've been on rebif 44 for just a
little over a year. So far it's been
working great for me with only 1 relapse
since I started. Hopefully, this is a
sign of what I can continue to expect.
Since starting the drug I decided to
create a site for injection organization
and reminders. The problem with this is
that i'm not familiar with the other drugs
and the frequency in which they are used.
I'd be interested in speaking with people
who are on a, b or c to give me some
pointers on how to develop my site
(www.Msneedle.Com) into a better site for
all ms drug users.
Anyone intersted in giving some
feedback?
Looking forward to speaking with you,
tim ward
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san54
Experienced User , Rather EHEALTHy
Joined: 28 Dec 2003 Posts: 227 Location: Virginia
Abc Drugs Posted: 12-28-03 16:52pm
Hi, I am very new to this site. I live
in virginia in the usa. I am on avonex
which is a once a week injection. I
lived in nj till 2001. I gave myself the
injection. I am on medicare and they
require that a doctor or nurse administer
the injection or they will not pay for it.
:d
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JackieH
New User, Becoming EHEALTHy
Joined: 28 Dec 2003 Posts: 6 Location: Nashville
Abcs Posted: 12-29-03 06:19am
I was on beta seron for 1 year but could
not handle the side effects. They are
rough. Those injections are every other
day.
I then went on copaxone for 1 yr. Side
effects very minor but I had a major
relapse. Those injections were daily.
My neuro. Then started me on rebif.
Tonight is the first night for a full 44
dose. I almost immediatly started to
improve. So far my side effects are at
least tolerable.
Good luck with your new site.
See you on the web.
Jackieh
nashville,tn
age 40
dx in march of 2001
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dcmginc
New User, Becoming EHEALTHy
Joined: 09 Dec 2003 Posts: 2 Location: New Brunswick, Canada
Posted: 01-12-04 22:29pm
Hello jackieh and san54!
Thank you for your info on the drugs you
are taking. I do appreciate all the help
I can get.
As I mentioned in my first post i'm also
on rebif, jackieh. Hopefully this will
work well for you. I know that i'm very
satisfied with the drug and what it's done
for me. I think in the last 15 months
that i've been taking it.. I've had the
flu like symptoms 2-3 times. This
consisted of chills and shaking. Every
time that it's happened i've been coming
down with a cold or was really tired from
some other event in my life. Other then
those times I haven't had any problems
other then a little redness in some
injection areas.
Tim
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litekpr2
New User, Becoming EHEALTHy
Joined: 20 Feb 2004 Posts: 23 Location: USA
Posted: 02-21-04 00:24am
Another thought for your website: each of
these drugs has its own website which is
professionally monitored and updated.
For example, you can go to www.Copaxone.Com and
learn all about that particular drug,
including perhaps some facts about it you
might want to include on your own site.
I have been on copaxone since feb 1999.
I've never had a major relapse since i've
been on it. Copaxone is the only one of
the abcrs that is considered "safe" for
patients also suffering from depression.
The three others are all classed as
"interferons" which apparently stand a
good chance of making depression worse,
possibly even to the suicidal degree.
Also, copaxone is the only one that does
not develop antibodies to itself after
injection. The three interferons do
eventually develop antibodies in the body
of the patient which they believe may
inhibit how much help the drug can be.
As for medicare, avonex is the only
injectable that medicare will pay for and
only if it is administered in a doctor's
office. The fact that it is a weekly
injection makes it feasible to see a
doctor every time. The others are either
daily (copaxone), every other day
(betaseron), or twice a week (rebif)
making it almost literally impossible for
patients to go to their doctors (who may
be located miles away) just to receive the
shots. To me, this is nothing short of
discrimination (plus they don't pay for
insulin injections for diabetics either
because they are injectables also).
However, for people of limited resources,
copaxone does have a financial assistance
program for those who qualify. It is
sponsored by nord (national organization
for rare diseases) and involves sending an
application plus extensive financial
documentation. You can obtain an
application by seeing the website www.Sharedsolutions.Com and/or calling their toll free number
and asking for one.
