Discussion:
copaxone vs. interferon?
(too old to reply)
winggirl
2004-04-15 03:30:18 UTC
Permalink
Have been on copaxone for three years. No relapses, which is great.
Can handle (significant) injection site pain. But can't handle
increasingly frequent IPIR reactions (about once a month). (IPIR =
immediate post injection reaction, the flushing/difficulty
breathing/sweating/shivering/abdominal & joint pain reaction that they
tell you lasts only 20 minutes but really goes on for a couple of
hours.) I think as injection sites have grown more fibrous/swollen
over the years, the drug is more likely to get into the bloodstream,
leading to IPIR. Also, daily injections so tiresome! Have become so
scared of IPIR reactions that I have to inject at night, am taking
lots of benadryl to manage the reactions, and have started skipping
days. Not good. Am planning to switch to Rebif (with a month of
overlap, taking both). Scared of flu-like side effects, depression,
and the mention in the materials of occasional 'anaphylactic'
response, not to mention 'skin necrosis.' But 3x/week sounds a lot
better than daily. Any experience/advice out there? Am I crazy to
switch?
trill
2004-04-21 07:45:10 UTC
Permalink
x-no-archive: yes

hello. i just subscribed and find only 6 msgs and only this one seems
relevant. i am just getting dxed and having treatments started and wonder
about other peoples' experience and how to find doctors and stuff like that,
if you can tell me some things, any things

thanks
trill
Post by winggirl
Have been on copaxone for three years. No relapses, which is great.
Can handle (significant) injection site pain. But can't handle
increasingly frequent IPIR reactions (about once a month). (IPIR =
immediate post injection reaction, the flushing/difficulty
breathing/sweating/shivering/abdominal & joint pain reaction that they
tell you lasts only 20 minutes but really goes on for a couple of
hours.) I think as injection sites have grown more fibrous/swollen
over the years, the drug is more likely to get into the bloodstream,
leading to IPIR. Also, daily injections so tiresome! Have become so
scared of IPIR reactions that I have to inject at night, am taking
lots of benadryl to manage the reactions, and have started skipping
days. Not good. Am planning to switch to Rebif (with a month of
overlap, taking both). Scared of flu-like side effects, depression,
and the mention in the materials of occasional 'anaphylactic'
response, not to mention 'skin necrosis.' But 3x/week sounds a lot
better than daily. Any experience/advice out there? Am I crazy to
switch?
Kip King
2004-05-02 05:34:59 UTC
Permalink
Post by winggirl
Have been on copaxone for three years. No relapses, which is great.
Can handle (significant) injection site pain. But can't handle
increasingly frequent IPIR reactions (about once a month). (IPIR =
immediate post injection reaction, the flushing/difficulty
breathing/sweating/shivering/abdominal & joint pain reaction that they
tell you lasts only 20 minutes but really goes on for a couple of
hours.) I think as injection sites have grown more fibrous/swollen
over the years, the drug is more likely to get into the bloodstream,
leading to IPIR. Also, daily injections so tiresome! Have become so
scared of IPIR reactions that I have to inject at night, am taking
lots of benadryl to manage the reactions, and have started skipping
days. Not good. Am planning to switch to Rebif (with a month of
overlap, taking both). Scared of flu-like side effects, depression,
and the mention in the materials of occasional 'anaphylactic'
response, not to mention 'skin necrosis.' But 3x/week sounds a lot
better than daily. Any experience/advice out there? Am I crazy to
switch?
I used Copaxone (which I still think for most MSers is the best of the
ABCR's) for about a year. I developed an alergy to it, I think, which
was making me worse (harder to walk). I'd never use an interferon
because of possible liver damage they can cause (I just heard about an
interferon user who had to have a liver transplant). I use IV
Calcium-EAP imported from Germany. It's not FDA approved here in the
US but you can get special "compassionate use" permission to import
which I have. I gives me better speech. I walk better (I use a walking
stick to go up stairs and sometimes a walker but no chair) and I have
normal bladder control. I think more MSers should try it. This stie
can help get the permission: The Brewer Science Library:
http://www.mwt.net/~drbrewer/ .
Best wishes, Kip
WiiTron
2008-11-20 21:43:47 UTC
Permalink
My doctor has switched me to Copaxone from Rebif. The only reason for
switching was my blood test result yielded abnormal liver functions. Higher
levels of enzymes. I never had any problem with Rebif. I'm not happy that
Copaxone is a daily injection. I still have a 3 mouth supply of Rebif that
has not expired yet. It would be a shame to have to trash it.
Post by winggirl
Have been on copaxone for three years. No relapses, which is great.
Can handle (significant) injection site pain. But can't handle
increasingly frequent IPIR reactions (about once a month). (IPIR =
immediate post injection reaction, the flushing/difficulty
breathing/sweating/shivering/abdominal & joint pain reaction that they
tell you lasts only 20 minutes but really goes on for a couple of
hours.) I think as injection sites have grown more fibrous/swollen
over the years, the drug is more likely to get into the bloodstream,
leading to IPIR. Also, daily injections so tiresome! Have become so
scared of IPIR reactions that I have to inject at night, am taking
lots of benadryl to manage the reactions, and have started skipping
days. Not good. Am planning to switch to Rebif (with a month of
overlap, taking both). Scared of flu-like side effects, depression,
and the mention in the materials of occasional 'anaphylactic'
response, not to mention 'skin necrosis.' But 3x/week sounds a lot
better than daily. Any experience/advice out there? Am I crazy to
switch?
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