Re: Copaxone-I'm starting - Donna

[Guest guest]

Donna,

I agree about Copaxone, I've found it to be an outstanding therapy so much to the point I get questioned by family and friends on whether I'm skipping my shot if I have a flare-up. They will have to do an out-of-this -world job of convincing me to go to a pill therapy before I'll ever go off of Copaxone.

Amy

Tammy,First and foremost.. do NOT follow the actual directions that come with the Copaxone telling you to keep the bubble pack out for 20 minutes to warm up before injecting!.. It will sting for a long long time if you follow those directions.It was suggested, and does work better.. if you take out the card with 5 syringes to the card.. and leave it out for 24 hours before injecting.. leaving the remaining four in the dark blue zipper pouch that should come with your start up kit type stuff.. If it doesn't.. find someplace "dark" to keep them, but at room temperature... when you are down to the last two injections from that card of 5.. take out the next card, and place it in the pack as well.. (The people at Shared Solutions will confirm this.. or should since I got this little hint from them way back when)..Secondly... their instructions will tell you to either ice before and heat after.. but what you want to do is the exact opposite.. (got that from them as well).. but you will get to the point that icing and heat aren't necessary.. I only think I tried it once or twice, and found that doing NONE of that was much better.. Instructions will tell you to set the auto-ject to 6.. as that's the most common setting.. If you don't have a ton of meaty tissue in your upper arms.. set it back to 4 or 5.. less likely to nick or completely hit a vein that way.. thighs & hips as well as belly can be at 6 with very little trouble.. AVOID stretch marks as often as you can.. at all costs.. if you have to use an area with tons of them (like my belly is) try to locate in between if possible..You won't need to pre-medicate with Tylenol or Advil or anything actually... My first injection, I stupidly tried to follow the Avonex pattern.. and used the back of my leg (plenty of fatty tissue there).. but sitting on the injection site, isn't pleasant.. and it stung for a couple hours.. If you avoid a spot that might have pressure on it for any period of time, that's best.. the sting (which you may or may not experience) will only last for a minute or two, and is really no more painful than a bee sting.. You may welt following the injection as well.. could welt quite a large area.. but no need to fret on that.. it only "looks" bad.. it will fade in an hour or so.. After the welt fade, you may experience heat and redness in that area.. avoid rubbing it for 24 hours.. If a cool cloth or something cool would help you, it's fine to use that to reduce the heat and redness..but that also only lasts for a few hours in most cases.. even if it's still there the next day.. for me anyway, it's not anything to cause concern.. IF you would happen to nick a vein and the Copaxone enters the vein (though it's not in the documentation) that's when the flushing and shortness of breath occurs.. depending on how much of the drug enters the vein, will affect the length of time this reaction will continue.. just be aware that it could happen (nothing to be afraid of or worried about.. in 3 years I've only every hit a vein one time) but just be aware that it could happen (when I did it, I actually questioned WHY I wasn't feeling any of this stuff because I KNEW I hit the vein.. but the onset was not immediate.. I had time to turn back to the desk, unscrew the auto-ject, cap the needle, drop it on the desk and put the auto-ject back together before the flushing started.. and it was first.. felt incredibly hot.. So that would another clue that you may become short of breath.. it will be scary should it happen.. AGAIN.. NOT A FREQUENT HAPPENING.. (once in 3 years for me.. and watching the depth of the auto-ject prevents that).. but should it occur.. try to sit back and relax.. do not try and put your head between your knees when you feel light headed, it will cause an immediate pounding headache.. that will stop when you sit back up.. lean back in your chair and remind yourself to take long slow deep breaths and not allow panic to set in.. IT WILL PASS.. If at all possible, have someone around with you when you do your injections.. if the above should occur.. they can help remind you to breath and try to relax.. and talk you through it to keep panic from setting in as well..Now NONE of that was meant to scare you off this stuff.. even that 1 episode that I had in the 3 years I've been on.. was nowhere near what I went through the 4 years I was on Avonex..Remember to alter your injection sites every day.. I used to do.. arm arm, leg leg, belly, hip hip.. and knew which day of the week was which body part to be injected.. (I now use both sides of my belly, cause it's sooooo big there's lots of area to use).. What I think you might want to do though.. is kind of pay attention to the way your legs work.. and you're going to think I'm completely off the wall.. my neurologist just raised eyebrows.. but the Shared Solutions nurse told me that I wasn't just imagining what I was feeling.. she'd just never had anyone tell her they felt a difference the first day.. and I DID feel a difference in my legs.. the first night.. and maybe it was only because it was during a trip to the bathroom in the middle of the night that made me notice it much more quickly than others.. not sure.. The nurse told me that it was about 2 weeks into therapy when she started hearing reports of this.. she said others never felt anything different and some were six months into therapy before they noticed the difference.. Within two weeks I was walking once again without a cane for assistance.. and shortly thereafter went back to work (when the job became available)..and was making trips up and down stairs more than several times a day.. and continued to do so until May of 2009.. when a major flare hit me.. and that put me back to wall walking, and the physical therapist said I really needed, and she ordered a wheeled walker, to prevent me from falling because my balance was so off.. I stopped taking the stuff for a couple of months... well probably most of this year.. think I have about six months of the stuff expired in the fridge that needs to be tossed.. But I'm lucky, I guess.. when I started back on it, on August 23rd, I think it was, and once again, I felt it working right away.. and one day last week, I spent ALL of the day making it around the house with my walker rather than using my power chair.. of course.. I deserved the smack in the head I got, for stopping in the first place, but a bout of imbalance really set in.. I couldn't even use the walker safely because my balance was soooo off.. so the power chair for the living room and around out here.. the manual chair to get me from bed to the bathroom at night.. The imbalance has subsided.. so now I get to start working the stiffness out of my legs and trying to build up stamina with the walker again..But once again.. I'll swear.. that they will take the Copaxone from me when the pry it out of my cold dead hands... It's a darned good therapy. and even if daily sounds daunting.. it becomes part of morning routines.. pop all of my pills and then pop myself with an injection in the morning.. And all is right with the world until time for my next round of pills (which IS the problem.. I forget the noon/afternoon doses quite frequently.. LOL)Hope this helpsHUGS|)onna

Well, being off therapy since May is killing me!!!! My neuro has decided to put me on Copaxone until "the pill" comes out. Funny, "the pill" always had a different meaning to us ladies didn't it? So, all you fellow MSers need to fill me in on this drug! I've done the Rebif, Avonex and Tysabri. They all quit working so I've got to get on something to thwart some of these symptoms until "the pill" is approved by our glorious FDA for use in the good ole USA. Been having some lovely numb spots everywhere! The other day I swear I woke up to an epidural, but only in my back. Now that was a nice feeling for a change! Usual I ache so bad from the fibro in my lower back that I actually welcomed that nice MS symptom. But the numbness and tingling and sometimes almost paralizing symptoms have gotten to be too much so Copaxone here we come!

Tammy, Tx

[Guest guest]

Good Morning Amy,

I was impressed by the statistics on Copaxone, that after being on

Copaxone for 10 years or more over 50% (I sure hope I'm remembering

and quoting this correctly) of patients being treated with Copaxone

were still walking unassisted.. and those that weren't were only

using a cane or something along that order..

And when someone around me asks if I've been taking my meds.. it's

usually cause I'm being a capital B.. with mood swings.. LOL.. and

it's meant about the anti-depressant to stabilize the mood swings...

and 9 times out of 10.. I probably have stopped taking those.. but

that's fairly common in MS patients (I read somewhere).. We

eventually start to feel we don't need them.. and stop taking

them..  Shame on me..

HUGS

|)onna

Donna,

 

I agree about Copaxone, I've found it to be an

outstanding therapy so much to the point I get questioned by

family and friends on whether I'm skipping my shot if I have a

flare-up. They will have to do an out-of-this -world job of

convincing me to go to a pill therapy before I'll ever go off

of Copaxone.

 

Amy

 

 

 

In a message dated 9/10/2010 10:50:41 P.M. Eastern

Daylight Time, donnaisalwayz@... writes:

 

Tammy,

First and foremost.. do NOT follow the actual

directions that come with the Copaxone telling you to

keep the bubble pack out for 20 minutes to warm up

before injecting!.. It will sting for a long long time

if you follow those directions.

It was suggested, and does work better.. if you take

out the card with 5 syringes to the card.. and leave

it out for 24 hours before injecting.. leaving the

remaining four in the dark blue zipper pouch that

should come with your start up kit type stuff.. If it

doesn't.. find someplace "dark" to keep them, but at

room temperature... when you are down to the last two

injections from that card of 5.. take out the next

card, and place it in the pack as well..  (The people

at Shared Solutions will confirm this.. or should

since I got this little hint from them way back

when)..

Secondly... their instructions will tell you to either

ice before and heat after.. but what you want to do is

the exact opposite.. (got that from them as well)..

but you will get to the point that icing and heat

aren't necessary.. I only think I tried it once or

twice, and found that doing NONE of that was much

better..

Instructions will tell you to set the auto-ject to 6..

as that's the most common setting.. If you don't have

a ton of meaty tissue in your upper arms.. set it back

to 4 or 5.. less likely to nick or completely hit a

vein that way.. thighs & hips as well as belly can

be at 6 with very little trouble.. AVOID stretch marks

as often as you can.. at all costs.. if you have to

use an area with tons of them (like my belly is) try

to locate in between if possible..

You won't need to pre-medicate with Tylenol or Advil

or anything actually... My first injection, I stupidly

tried to follow the Avonex pattern.. and used the back

of my leg (plenty of fatty tissue there).. but sitting

on the injection site, isn't pleasant.. and it stung

for a couple hours.. If you avoid a spot that might

have pressure on it for any period of time, that's

best.. the sting (which you may or may not experience)

will only last for a minute or two, and is really no

more painful than a bee sting..  You may welt

following the injection as well.. could welt quite a

large area.. but no need to fret on that.. it only

"looks" bad.. it will fade in an hour or so.. After

the welt fade, you may experience heat and redness in

that area.. avoid rubbing it for 24 hours.. If a cool

cloth or something cool would help you, it's fine to

use that to reduce the heat and redness..but that also

only lasts for a few hours in most cases.. even if

it's still there the next day.. for me anyway, it's

not anything to cause concern..

IF you would happen to nick a vein and the Copaxone

enters the vein (though it's not in the documentation)

that's when the flushing and shortness of breath

occurs.. depending on how much of the drug enters the

vein, will affect the length of time this reaction

will continue..  just be aware that it could happen

(nothing to be afraid of or worried about.. in 3 years

I've only every hit a vein one time) but just be aware

that it could happen (when I did it, I actually

questioned WHY I wasn't feeling any of this stuff

because I KNEW I hit the vein.. but the onset was not

immediate.. I had time to turn back to the desk,

unscrew the auto-ject, cap the needle, drop it on the

desk and put the auto-ject back together before the

flushing started.. and it was first.. felt incredibly

hot.. So that would another clue that you may become

short of breath.. it will be scary should it happen..

AGAIN.. NOT A FREQUENT HAPPENING.. (once in 3 years

for me.. and watching the depth of the auto-ject

prevents that).. but should it occur.. try to sit back

and relax.. do not try and put your head between your

knees when you feel light headed, it will cause an

immediate pounding headache.. that will stop when you

sit back up.. lean back in your chair and remind

yourself to take long slow deep breaths and not allow

panic to set in..  IT WILL PASS..

If at all possible, have someone around with you when

you do your injections.. if the above should occur..

they can help remind you to breath and try to relax..

and talk you through it to keep panic from setting in

as well..

Now NONE of that was meant to scare you off this

stuff.. even that 1 episode that I had in the 3 years

I've been on.. was nowhere near what I went through

the 4 years I was on Avonex..

Remember to alter your injection sites every day.. I

used to do.. arm arm, leg leg, belly, hip hip.. and

knew which day of the week was which body part to be

injected.. (I now use both sides of my belly, cause

it's sooooo big there's lots of area to use)..

What I think you might want to do though.. is kind of

pay attention to the way your legs work.. and you're

going to think I'm completely off the wall.. my

neurologist just raised eyebrows.. but the Shared

Solutions nurse told me that I wasn't just imagining

what I was feeling.. she'd just never had anyone tell

her they felt a difference the first day.. and I DID

feel a difference in my legs.. the first night.. and

maybe it was only because it was during a trip to the

bathroom in the middle of the night that made me

notice it much more quickly than others.. not sure..

The nurse told me that it was about 2 weeks into

therapy when she started hearing reports of this.. she

said others never felt anything different and some

were six months into therapy before they noticed the

difference..

Within two weeks I was walking once again without a

cane for assistance.. and shortly thereafter went back

to work (when the job became available)..and was

making trips up and down stairs more than several

times a day.. and continued to do so until May of

2009.. when a major flare hit me.. and that put me

back to wall walking, and the physical therapist said

I really needed, and she ordered a wheeled walker, to

prevent me from falling because my balance was so

off..

I stopped taking the stuff for a couple of months...

well probably most of this year.. think I have about

six months of the stuff expired in the fridge that

needs to be tossed..

But I'm lucky, I guess.. when I started back on it, on

August 23rd, I think it was, and once again, I felt it

working right away.. and one day last week, I spent

ALL of the day making it around the house with my

walker rather than using my power chair.. of course..

I deserved the smack in the head I got, for stopping

in the first place, but a bout of imbalance really set

in.. I couldn't even use the walker safely because my

balance was soooo off.. so the power chair for the

living room and around out here.. the manual chair to

get me from bed to the bathroom at night..

The imbalance has subsided.. so now I get to start

working the stiffness out of my legs and trying to

build up stamina with the walker again..

But once again.. I'll swear.. that they will take the

Copaxone from me when the pry it out of my cold dead

hands... It's a darned good therapy. and even if daily

sounds daunting.. it becomes part of morning

routines.. pop all of my pills and then pop myself

with an injection in the morning..

And all is right with the world until time for my next

round of pills (which IS the problem.. I forget the

noon/afternoon doses quite frequently.. LOL)

Hope this helps

HUGS

|)onna

Well, being off therapy since May is killing

me!!!!  My neuro has decided to put me on

Copaxone until "the pill" comes out.  Funny,

"the pill" always had a different meaning to us

ladies didn't it?  So, all you fellow MSers need

to fill me in on this drug!  I've done the

Rebif, Avonex and Tysabri.  They all quit

working so I've got to get on something to

thwart some of these symptoms until "the pill"

is approved by our glorious FDA for use in the

good ole USA.  Been having some lovely numb

spots everywhere!  The other day I swear I woke

up to an epidural, but only in my back.  Now

that was a nice feeling for a change!  Usual I

ache so bad from the fibro in my lower back that

I actually welcomed that nice MS symptom.  But

the numbness and tingling and sometimes almost

paralizing symptoms have gotten to be too much

so Copaxone here we come!

 

Tammy, Tx