Re: Copaxone-I'm starting - (Donna and Kate)

[Guest guest]

Hey Donna.... Yep, that's the right Kate. I remember when Kate sent Donna that 'care' package! (can you believe I remember something:) SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Sat, September 11, 2010 8:11:46 AMSubject: Re: Copaxone-I'm starting - Tammy

I might have to wrong Kate... but I was thinking it was you.. living

in New York? sent me a package years ago.. but anywho...

I didn't actually learn to inject, on myself.. Way back when, before

being married and having kids and such.. I had a roommate who was

diabetic.. I felt so bad for her, coming down in the morning with

her arm pinned against a door frame trying to push up the flabby

part of the arm to inject her insulin.. I called her doctor (who

happened to be my doctor as well) and asked if there was a problem

with me doing her insulin injection the mornings of her arms.. Doc

said nope.. explained how to do it and to have show me once

or twice.. I started to do her injections after that.. easy peasy...

when sticking her... a little more difficult doing me.. but after

taking a deep breath.. doable.. LOL..

but why take the deep breath when I can torture ?

HUGS

|)onna

I certainly don't recall being

your 'savior' at

any time, Donna! Perhaps you are mixing me

up with someone else, my friend.

lol about , though.

You are a braver woman than I to self inject

without the autoject. When they taught me to

do that, it really freaked me and grossed me

out!

love, Kate

Re: Copaxone-I'm starting - Tammy

> > To: MSersLife

> >

> > > 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

> > > >

> > > >

> > > >

> > > >

> > > >

> > >

> >

> > love and blessings,

> > Kate

> >

> >

> >

> >

>

love and blessings,

Kate

[Guest guest]

I resemble that one too Sharon.. memory.. not I..

HUGS

|)onna

Re: Copaxone-I'm starting - Tammy> > To: MSersLife > >> > > 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> > > >> > > >> > > >> > > >> > > >> > >> >> > love and blessings,> > Kate> >> >> >> > > love and blessings,Kate