Stopped Copaxone
GT Tick
careful consideration.
I've said before I have almost no body fat except for the belly and the
shots have gotten to be very uncomfortable. Most of them still have a
pretty pesky knot a week later when rotation again brings them back to
that sight.
Now I've also developed some hard, black thumbnail size spots, mostly on
my hips, that refuse to go away. There are eight of them. They've hung
around for months. I'm wondering about necrosis since pricking these
spots with a pin has no feeling.
I'm setting an appointment with my neuro* for some more advice. Since
I'm a pretty good ways into secondary progressive now I'm not sure how
much good the Copaxone is doing anyway. Thinking about getting back on
Cellcept long term.
Tick
*Dr Olaf Stuve. He's a cracker jack. A quick look on Google will show
just a few of the trials and MS studies he is or has been involved in.
*****Don't Cry Because It's Over, Smile Because It Happened*****
skeeterette
look awful. I cannot wear a sleeveless top because this looks so bad.
I have taken Copaxone shots for over 3 years and have had the same
thing happen. My hips are black, as well as my thighs and abdomin.
It is VERY distressing.
The REAL problem is this:
Teva Neuroscience does not include, in their literature, that these
kinds of side-effects occur. If you talk to any Dr. regarding this
issue, they will tell you - YES - this can happen from Copaxone
injections, BUT...you don't find this out until "after" you have taken
them for awhile.
Something should be done to inform ALL users of this ugly reaction.
Kathy
GT Tick
ASMS about the problems BobbyD had.
Or keep monitoring this thread and see how quick he jumps in if he's not
gone fishin'. :-)
Tick
---
---
Re: Stopped Copaxone
Group: alt.support.mult-sclerosis Date: Sat, Mar 24, 2007, 3:16pm
(CDT-2) From: ka7...@gmail.com (skeeterette)
barnowl
my arms, legs, and abdomen, as well as hard lumps. The neuro wanted me to
stop a year earlier but I dragged it on, thinking it wasn't that bad. Wrong
move. At the end the neuro said that Teva was denying that this was caused
by copaxone, and he wanted to do a biopsy of some the the sites because they
were trying to collect proof. Meanwhile Copaxone was trying to send out a
nurse to find new injection sites so I wouldn't quit. I ended up cancelling
the biopsy appointment - decided I just couldn't be bothered to add yet
another scar.
Betaseon also did a real number on me, and I pictured the copaxone people
and the betaseron people pointing the finger at each other as to who was to
blame. Now I'm on Avonex, which doesn't affect the subcutaneous tissue as it
is an i.m. shot. I just hope I don't look back a couple of years from now
because I have holes in the muscles!
Dawn
<ka7...@gmail.com> wrote in message
news:1174774576....@b75g2000hsg.googlegroups.com...
GT Tick
like symptoms for days on end. Three days out of every week feeling
miserable was unacceptable. And yes folks, I tried everything from
medicine to multiple-medicines to meditation to medicinal alcohol.
---
---
Group: alt.support.mult-sclerosis Date: Sun, Mar 25, 2007, 12:50am
(CDT+5) From: mdlaf...@nospamshaw.ca (barnowl)
in my arms, legs, and abdomen, as well as hard lumps. The neuro wanted
me to stop a year earlier but I dragged it on, thinking it wasn't that
bad. Wrong move. At the end the neuro said that Teva was denying that
this was caused by copaxone, and he wanted to do a biopsy of some the
the sites because they were trying to collect proof. Meanwhile Copaxone
was trying to send out a nurse to find new injection sites so I wouldn't
quit. I ended up cancelling the biopsy appointment - decided I just
couldn't be bothered to add yet another scar.
Betaseon also did a real number on me, and I pictured the copaxone
people and the betaseron people pointing the finger at each other as to
who was to blame. Now I'm on Avonex, which doesn't affect the
subcutaneous tissue as it is an i.m. shot. I just hope I don't look back
a couple of years from now because I have holes in the muscles!
Dawn
*****Don't Cry Because It's Over, Smile Because It Happened*****
barnowl
I hear what you're saying about Avonex - I'm at the point now where I am
questioning how much longer I will continue because the side effects seem to
be worsening rather than improving. But, on the bright side the injection
sites are good :-). How long did you stay on Avonex before switching?
Dawn
"GT Tick" <OLT...@webtv.net> wrote in message
news:23020-460...@storefull-3235.bay.webtv.net...
skeeterette
to their Doctors so that they can obtain the needed evidence against
Teva Neuro.
If I had the money, I would sue them over this but I'm as poor as a
church mouse.
Let's not just "take this" from the manufacturer's - Teva
Neuroscience.
How can we get this done to inform ALL Copaxone Patients of this, so
that no more HARM can be done?
Let's start working on this...
Kathy
> >> *****Don't Cry Because It's Over, Smile Because It Happened*****- Hide quoted text -
>
> - Show quoted text -
skeeterette
Maybe we can take this to Montel - since he has MS. He would LOVE to
hear this, and with his "pull" he could get something done.
It's worth a try, in my opinion, what do you all think?
Let me know...
Kathy
On Mar 24, 5:50 pm, "barnowl" <mdlafra...@nospamshaw.ca> wrote:
never@million
>Another thought:
>
>Maybe we can take this to Montel - since he has MS. He would LOVE to
>hear this, and with his "pull" he could get something done.
>
>It's worth a try, in my opinion, what do you all think?
>
>Let me know...
>
>Kathy
The below post is signed by a person named Dawn , , , from Canada.
Hmmmm?
Donn
Jennifer
disease.
Heck, if you have cancer, you get put on nasty chemo. There are huge long
term effects with chemo and kids who take chemo when they are young, will
sometimes have horrible long term side effects.
Its a catch 22 in my eyes.
Jen
"skeeterette" <ka7...@gmail.com> wrote in message
news:1174873914.4...@l75g2000hse.googlegroups.com...
skeeterette
What is ASMS? Can you give me the link, as I couldn't find it???
Thanks, for your help!
never@million
Kevin
> Dear Tick,
>
> What is ASMS? Can you give me the link, as I couldn't find it???
>
> Thanks, for your help!
Alt.support.Mult-sclerois
Here, where you at, 'dis place. Home of the brave....or the
insane.....or both.
NHE
>
> I went off Copaxone a year ago, after 4 years, because of the "indents" in
> my arms, legs, and abdomen, as well as hard lumps. The neuro wanted me to
> stop a year earlier but I dragged it on, thinking it wasn't that bad.
> Wrong move. At the end the neuro said that Teva was denying that this was
> caused by copaxone, and he wanted to do a biopsy of some the the sites
> because they were trying to collect proof. Meanwhile Copaxone was trying
> to send out a nurse to find new injection sites so I wouldn't quit. I
> ended up cancelling the biopsy appointment - decided I just couldn't be
> bothered to add yet another scar.
>
> Betaseon also did a real number on me, and I pictured the copaxone people
> and the betaseron people pointing the finger at each other as to who was
> to blame. Now I'm on Avonex, which doesn't affect the subcutaneous tissue
> as it is an i.m. shot. I just hope I don't look back a couple of years
> from now because I have holes in the muscles!
>
I've been on Avonex for about 6.5 years. When I initially chose Avonex over
Betaseron and Copaxone, I did a careful review of the doctor's prescribing
information for each of the three drugs. I looked up every word I wasn't
familiar with in a medical dictionary and I also spent some time reading the
primary literature published in the medical journals. There were several
aspects of Avonex that made it appear to me to be the better choice. For
example, compared to Betaseron, Avonex is produced in mammalian cells NOT
bacteria cells. As a result, Avonex is identical to human interferon-beta.
Bacteria process proteins slightly differently from mammals, i.e., they do
not glycolsylate proteins (attach sugar groups to them). The lack of these
sugar groups on a normally glycosylated protein tends to make Betaseron look
like a foreign protein leading to an increased prevalence of neutralizing
antibodies with Betaseron as opposed to Avonex. Moreover, the injection
site reactions are minimal with Avonex. The worst that I've experienced is
that on one occasion early in my treatment, probably the second or third
injection, I had a slight limp in the leg I injected into. This was
probably attributable more to poor injection technique than anything to do
with the Avonex as it was still fairly early on in my treatment. The only
other injection site reactions that I've had over the last 6 years include
just a few quarter size bruises. These aren't very common and they usually
clear up in a week. My best guess is that they're probably due to the
needle hitting a blood vessel on its way down to the muscle. In comparison,
the primary thing that was of concern to me with Copaxone was that the
doctor's prescribing information clearly stated that Copaxone was found to
be clastogenic. This means that in a cell based assay it was found to cause
breaks in DNA. I have also read reports that site Copaxone as being
responsible for lipoatrophy. While this is purely conjecture, the
clastogenic activity of Copaxone could be linked to lipoatrophy since if
there is too much damage to a cell's DNA it could induce apoptosis or cell
death. Although apoptosis is a normal cellular process, wide spread
apoptosis, if induced by Copaxone, could lead to the side effects discussed
in this thread. The "flu like" side effects of Avonex are a problem
however. First off, calling them "flu like" is an understatement. For my
first injection I followed Biogen's recommendation and took some Tylenol.
This was nearly useless and provided little benefit. Indeed, I had the
worst fever I can ever recall having in response to my first Avonex
injection. This essentially incapacitated me for 12-18 hours or so. I
called my neurologist's office the next day and told them that if this was
going to be what it's like every week then I didn't think I could do it.
They recommended that I try ibuprofen instead. This worked much better.
However, I still had fairly bad "flu like" side effects for the first year.
These included chills, shakes, fevers, etc. Sometime after the first year
though I discovered that I can handle Avonex much better if I take it in the
middle of the day rather than at night and ibuprofen seems to be able to
block most of the side effects I do experience though I still feel a little
tired and run down the next day. When I started out with ibuprofen, I took
600 mg about every 6 hours for the first 24 hours. I now take just 400 mg a
few hours after my shot and on rare occasion I sometimes need another 400 mg
the next day. I also take a handful of supplements every day including
omega-3 fish oil, cod liver oil, vitamins C, D, and E, r-lipoic acid, ground
flaxseeds, turmeric, and green tea. Anyway, I hope that sharing my
experience here has been helpful for someone. Thanks for your patience with
this long post.
NHE
bobbyD
you did your homework for sure!! before going on avonex,!
cheers
bobbyD
"NHE" <n...@nhe.nhe> wrote in message news:4608D7E7...@nhe.nhe...
barnowl
there was nothing else. When Avonex came on the market I remember hearing
that it only differed by one molecule. I didn't look any further, as I was
doing okay on betaseron. When I started having problems with it the neuro
just suggested I stop interferons. So, gave copaxone the try, and now
Avonex. I never researched them all for comparative purposes because they
weren't really all available at the time.
This is definitely good information for anybody presented a choice of
treatment now. After 11 years on one treatment or another, my m.s. has
worsened only slightly - who knows if this is because of the meds. My
skin/tissues are a mess, but is the meds did slow the progression, maybe it
was worthwhile. I am on Avonex now, and so far the site reactions are
minimal, but the flu effects seem to be worsening after a year. I'm not too
impressed, but will give it a bit more time.
Thanks for the info.
Dawn
"NHE" <n...@nhe.nhe> wrote in message news:4608D7E7...@nhe.nhe...
>
NHE
There was one thing that I forgot to mention. When I did my initial
comparison of the ABC's, I noted that the doctor's prescribing information
for Betaseron clearly described that one of the side effects was "injection
site tissue necrosis" while for Avonex there was no mention of necrotic
injection site reactions. It's my best guess that the difference between
the two is due primarily to the histological differences between
subcutaneous tissue and muscle. Overall, I've been happy with my choice of
Avonex over the other two ABC's. I also feel that my supplement regimen has
played a role in slowing my progression. However, I wasn't diagnosed until
8 years after my initial attack. During that time I was completely
asymptomatic. Had I been diagnosed after my initial attack, I'm willing to
go out on the proverbial limb and state that I think the supplement regimen
and dietary changes that I'm on now could have played a major role in
greatly extending that period between my two attacks. But then, you know
what they say about hind sight... so I do what I can now.
NHE
bobbyD
"NHE" <n...@nhe.nhe> wrote in message news:460A546D...@nhe.nhe...
> NHE wrote:
> There was one thing that I forgot to mention. When I did my initial
> comparison of the ABC's, I noted that the doctor's prescribing information
> for Betaseron clearly described that one of the side effects was
> "injection
> site tissue necrosis" while for Avonex there was no mention of necrotic
> injection site reactions. It's my best guess that the difference between
> the two is due primarily to the histological differences between
> subcutaneous tissue and muscle.
interesting point,, i will add to it,,
- i mentioned it,, but it is worth repeating,
- i had NO side effects when i injected into my thighs,, the site on my
thighs had NO FAT TISSUE,, on the top area,, my legs were ripped from
sk8boarding daily,,, i did have a minimal gut, not a six pack,,
so my point- i injected directly into muscle on my thighs,, and thus no
effects,, in fact the initial red marks went away within 24 hrs,, on my
thighs,, and my ab red marks stayed for 7 years or so,,
the sub Q injections in my abs caused probs,, the sub q on my thighs didnt
hit any fat tissue only muscle and that accepted the meds better,,,
i still have my Betaseron journal,, with an entry every day the entire year
and 2 months on it,, recorded every single thing i noticed,,, all
documented,,,
that way my story has remained exactly the same,, since 97,,, i have it all
documented,,,
also i want to add,, my boxes of betaseron came with a patient handout, with
all results of the initial drug trials with it,, that were presented to
Health Canada for approval,,,
it listed all possible side effects,,, the doctors seemed more concerned
with the attempted suicides and the one that actually killed themself,,,
of the groups on the drug in the trial
360 total patients
2/3 got high or low dose
-5 attemped one successful suicide of the 240 on the drug
-5% or 12 people got some degree of necrosis
it was all listed out for me to read,,, i was put on an anti depressant for
their main concern of depression.
i even learned a trick or 2 injecting,,,
- wait till the alcohol you wipe with drys a bit more,, as you get a bit
more stinging pain when you inject right away and draw some alcohol into the
injection hole with the needle.
- one issue i always had- DULL injection tip from sticking it in to draw
out the meds to inject with the 27g needle,,,
i popped the 3cc big needle onto the top of the injecting needle after
removing the capped 27g needle,, then i would draw in the meds,, using the
first needle to mix it etc,, and once i got the dose into the syringe, i
would then remove the big needle and put the smaller injection one back on
it,,
-this way the tip of my injecting needle never got damaged or dulled when
stuffin it into little bottle with my shakey hands,,, to draw it up.
i alsways used the first needle that was big,, capping it back carefully so
it never got hurt or contaminated the tip,,,
my injecting needle was always sharp ,, and strong,, less chance of
breaking inside you, or bending,, etc. took longer but ,, i got time.
cheers
bobbyD
Chrys and sometimes Brian
Tick! You can't stop therepy! I'm secondary progressive
too....doesn't it scare you babe to NOT do everything possible? You
worry me!
Chrys in Ferndale
olt...@htcomp.net
Chrys, I'm going to do everything I can to fight the MonSter. I have
an appointment to see my neuro in April and go over the options. We
may decide the Cellcept is a good alternative to one of the CRAB
drugs.
In the meantime chocolate and vitamin D will have to do.
Thanks for the concern. Bear hugs.
Tick
famous21
I was on Avonex (Interferon Beta 1-A) therapy for about two years, and
I could never get over the flu like symptoms which is one of the side
effects. I did not like feeling sick once a week. I stopped the
shots, and was on no MS modifying medication for about a year, and
found that was not a good option for me to continue to pursue.
Presently, I am on Copaxone and it has presented no side-effects
outside of the injection sites problems several posters have mentioned
in this thread. I am secondary progressive, and taking life one hour
at a time; nothing more, nothing less.
Enjoy life as we now have it. There are many others with maladies,
which are much worse than ours.
Peace is better than aggression,
Famous
On Mar 24, 5:50 pm, "barnowl" <mdlafra...@nospamshaw.ca> wrote:
M
for about 6 months. My doctor and I feel that it probably won't do
anthing because I am at the end of being Secondary Progressive and
moving into Primary Progressive. We both figured that it was worth a
shot (pun intended) to give it a try. Hopefully it will do some good
but looking at it realistically probably not. I am not trying to sound
like a defeatist but a realist. If it help, wonderful, if not I will
be disappointed.
Michele
skeeterette
Hey, Michele,
I used to get my Copaxone, for free, through NORD - National
Organization for Rare Disorders, but they went belly-up for 2007.
Medicare Part D, does not help with the payments until you reach your
$3800 limit, which is ridiculous! I only have Medicare, with no Part
D, at this time, so anything would be too expensive for my pocket.
Anything is worth a try, Michele. Never give up! I believe, that
the 3 years that I have taken Copaxone, stopped my progression, while
also lessening my exacerbations of Optic Neuritis, nystagamus, severe
migraines (although I was told by my 'new' Neuro, that 'mirgraines'
are not part of MS), exhausting fatigue, weakness, speech problems,
handwriting problems, cognitive/memory dysfunction and urinary
problems, which I am experiencing, right now.
New medication(s) are on the horizon, that promise hope to all of us!
I hope and pray to see (in my lifetime) not only a cure, but at least
a "good" medicaton or combination of medications that will stop the
progression of this horrible disease.
Take Care, Michele and let us know what happens!
Kathy
On Apr 8, 11:01 am, M <wpon...@charter.net> wrote:
> I will be starting Copaxone if the insurance covers it. I will try it
> for about 6 months. My doctor and I feel that it probably won't do
> anthing because I am at the end of being Secondary Progressive and
> moving into Primary Progressive. We both figured that it was worth a
> shot (pun intended) to give it a try. Hopefully it will do some good
> but looking at it realistically probably not. I am not trying to sound
> like a defeatist but a realist. If it help, wonderful, if not I will
> be disappointed.
>
> Michele
>
> >> - Show quoted text -- Hide quoted text -