copaxone users please read :)

[bubbles_04]

Hi!,

So I'm going to start injecting my copaxone on thursday night. I'm getting scared about site reactions and the sting pain as you inject. I know I have two days till I start but my copaxone is being delivered today and it's going to scare me having it in my house. Like a ticking time bomb or something. So I was just looking to see what side effects people are having and how bad they are and how you cope. If you have no side effect, I wana hear about that :). The booklet says something like 60% of people get site reactions and a painful sting when injecting, but it seems to me everyone has these side effects. Maybe those that don't suffer don't post. Anyway please post me some info and encouragement.

Thanks, Kat

[Lura_li]

Thank you all so much, I just started copaxone two days ago, today was my third injection.  The shared solution people have been wonderful but they have went over a couple of times the bad reactions I could have and have made me more nervous, and thinking that it will only get worse not better.  Reading all of your positive comments has made me feel better.  Thanks again.

[bubbles_04]

Sadly my nurse was sick and canceled. I will be starting copaxone on saturday morning. I'll update you after to let you all know how it goes. :)

[bubbles_04]

Thank you all so much for your replies!! They really have made me feel better :) The copaxone is here and just like you said Jane it was in a huge box!!! Mine was huge because it had a sharps box in it. It gave me a weird feeling pulling that out, like I was at work!! For those that don't know I'm a researcher, so we have a lot of sharps boxes here. Most of our chemicals come in the same box as the copaxone!! I took a look at the needles and thought it doesn't look so bad. A 1ml does seem a lot though, no wonder people get lumps. That seems like a lot of fluid. I guess it’s to do with solubility and toxicity of the drug.

Tomorrow is D day and I'm ready for it!! Thanks to you guys I wasn't so worried when I got home to pick up the package and I'm feeling ok about the injection tomorrow. I'll let you all know how it goes!

[zoefromsussex]

Hiya Kat,
I know how you feel because I too am waiting to get started with Copaxone. You hear such awful stories about the site injections & sting etc but I've also found loads of positive feedback too so I'm concentrating on that instead! Anyway, everybody is so different. A 'sting' for one person might be nothing for you and if you rotate your sites, you might never get much more than a bit of redness. I will keep my fingers crossed that all goes well for you but I'm sure you'll soon be looking back and wondering what you were so anxious about!
Take care, Zoe x

[Deb61]

I've been on Copaxone 4 years, and I love it.  I am so happy that I chose this medicine as it has so few side effects, and the Shared Solution company helps me out with the cost.    but most of all, I've not had any significant progression in the MS.

I was really doubting my choice at first because the injection site was warm, raised, and red.  I didn't think I could live with that, and it hurt to walk even in the leg that I injected into.  However, that all went away.  I never have injection site reactions, now.  

I warm the area before injecting (which can be done in the shower).  I think this helps a lot.  Also, I manually inject.  This took about a year before I could this on my own, but glad I learned.  I think it helps to be able to control the speed that the medicine injects.  If the medicine went in to quickly, it would pool under the skin.  

You'll be an old pro, too, after a while.  Best wishes!  
Deb

[debgen]

Hi Kat,
I have been on Copaxone for 18 months. I remember being so scared when the nurse from Shared Solutions came to my house to show me how it all works. I cried, thinking this is the first da of the rest of my life, taking daily injections. I am a real wimp.
The autoject works very well for me because I never actually see the needle. In the beginning I felt the sting and my arm felt a bit sore afterward but nothing Really painful. I have very fair skin so it left a red spot that disappeared within a few hours. I found heating up the site prior to injecting and cooling the sight immediately after helped everything!
After a few months it became second nature. I don't even think about it any more. I no longer need the heat or oce pack for cooling. I guess I have gotten so used to the sting of the injection that I hardly notice it at all. I have been blessed with no negative side effects. Trust me, it really does get easier!
Keep us posted on how you are doing :)
(((hugs)))
Deb

[tingletingle]

Hey Kat,

You are definitely not on your Pat Malone in being scared about injecting. I was THE biggest wimp.

I cried going to see the nurse and I cried driving home. Injecting brought the dx home that I am actually sick.

But fear not, as many have said you simply get used to the bee-sting. I'd much rather this side-effect than flu like symptoms or the host of other things that can affect brain and liver.

You're in safe hands.

Be blessed
Alex

[rendean]

Kat,

You have gotten some great advice! Doublevision laid it all out perfectly (thanks!) and what she said and the others is true, you eventually get to the point where it is part of your daily routine and the fear will be gone.

Be easy on yourself.  This is a new bump in the road and it's okay to feel scared. I know I was too and I'm a nurse. So, try to relax and let Copaxone become part of your routine and your weapon against MS.

BTW, Jen was correct about rubbing the welts. Wait till 24 hours post-injection and then massage to break up any bumps. I usually did it in the shower with warm water running over it.Massaging definitely decreases the bumps and lipotrophy (atrophy of the fat layer leaving small dimples in your skin).

Hang in there and let us know how it goes for you!

Ren

[JaneK1975]

By the way, of your nurse is Jennifer, tell her I said "Hi". She's super cool and I just had her over last week to help me do my first manual injection.

[JaneK1975]

Did yours arrive in a giant ice-box looking styrofoam container? The first time I came home to that box, I thought, "Geez, I hope my neighbors aren't worried that I'm building a bomb or something..."

I am definitely one of the 60% who gets site reactions. I get a welt, every single time, and in over three months of injecting I still haven't figured out how to avoid it. I also sometimes get small red/dark marks that last up to two days (maybe 5% of the time I get those). A few times I have ended up with a small bruise by accidentally hitting a vein. The most annoying part of my site reactions is the lump under the skin that is sometimes pretty large and sore for a couple of days. So... I guess I have enjoyed the gamut of site reactions, but honestly none of them are so bad that I would skip a shot.

Even with all the reactions I get, no one has ever noticed or asked me about them. The welts are always gone by the time I wake up the next day. The red/dark marks are light enough that I don't even think anyone would notice them if I was wearing a bathing suit. They are noticeable to me, but I don't think anyone else would see them. The lumps under the skin are totally invisible, I can just feel them.

You are going to be great, Kat. You will feel like a hero afterwards. The sting certainly does sting, but for me it's never been as bad as a bee sting. A bee sting might make me cry. Copaxone just makes me grit my teeth and ask my fiance for the ice pack to make me feel better. I get way more sympathy from him than I should ;)

Best wishes and please keep us posted!

- Jane

[Beula88]

Hi Kat!  I was the same way when I started!  :O)  The autoject arrived first and it looked SO BIG and SCARY!  I have been on Copaxone for 3 years and now have very little side effects.  I have a pale complexion and some times get a bruise if I hit a vein.  I do get the red welt for about 24 hours- these are much smaller and not as "hot" as they were the first 6 to 9 months.  The injection site MAY sting about once the whole month.  In the beginning ,  I would put an ice pack on after the shot so reduce some of the sting- I do not need these at all anymore.  It gets easier, your body gets use to it,  it just takes a few months!  Hang in there-- it does get easier!  :O)  ~Cami

[jensequitur]

With Copaxone, you must massage the injection site.  Neglecting it will eventually cause lipoatrophy.  The lipoatrophy (lack of body fat in areas, combined with scar tissue) caused me to have more of the IPIRs, which eventually got bad enough that I had to stop taking the drug.

[doublevision1]

I've been on Copaxone for 4 years.   I won't sugar-coat it, at first it really did sting for a half hour or so after the shot, and I was very discouraged wondering how I would be able to continue, day in, day out, indefinitely.  However after a while my system adjusted to it and I barely feel a thing, particularly in areas with more fat tissue like (for me) buttocks and hips.  I did get site reactions initially but they too subsided.  

Be prepared for a warm, red welt/lump.  It will go away.  These too should reduce over time.  Just be sure never to inject into a lump which you will avoid by rotating injection sites.  At first I did the whole routine they suggest: warm the site first, then inject, then ice.  It became such a daily production that I stopped doing it and honestly I didn't notice any difference with the sensation of the shot or the site reaction.  

I also no longer bother with the autoinject as for me it's just another unnecessary step, but if you are squeamish at the idea of injecting yourself, it is a good tool, just pop it in the device, hold it against your skin and push a button, super easy.  

In the whole time I've been on Copaxone I only once had what they call a post-injection reaction but it was minor and brief.  Just a little heart racing and wooziness.  It happened in a flash and then was over.

When you say you're scared to have it in your house, I understand.  At first, every time I opened the fridge and looked at that blue and white box I found it disturbing.  Again, this wears off as you simply get used to it.  The fear and anxiety will dissipate soon enough as the shots become a part of your daily life.  I promise it will be no big deal soon enough, and you'll look back and wonder why you ever even worried about it.

A few here have had to stop taking it due to extreme itching.  There's no way to predict if this will happen to you.  It doesn't happen to most, based on the side effect stats from the studies.  I haven't experienced this other than the rare occasion of some minor itching right after my shot which quickly goes away.

If only someone had just warned me about the initial sting, it would have stressed me out much less knowing it would eventually stop happening.  I hope this heads up reassures you.

You will do just fine.  It's scary because it's new and unfamilar and strange but it won't be that way for long.  You'll adapt to it and it will become as mundane as brushing your teeth.

Not that you'll need it but good luck!  Keep us posted on how you make out.