Describe please.

[DianeD]

OKAY, I'm on Copaxone and it's been about 6 weeks.

My injection site reactions seem worse than better~ I get welts about two to three inches wide and raised. They itch.

I jokingly told my dh my injection sites 'talked' to each other. One will begin itching and the others do too.

I also get discolorations and ugly bruising.

I can deal with this (I guess) but wonder if it is typical.

I know I'm injecting properly and my dh sometimes will also inject for me. I don't press down hard. After it clicks I do decrease the pressure; don't move the needle around and keep to the 10 second rule.

Puzzling.

Diane

[Susanette]

just to add to the confusion...

Hi Diane, I'm not much help with this because I've been taking Copaxone for 13 whole days....But I was hoping you didn't mind my hijacking with some questions of my own. That said, I have gotten huge huge welts from the very 1st injection, along w/ stinging and pain and redness. The stingin and pain are worse some places (arms especially) than others, but I'm accepting it as fact for now.

My questions are, I think I read/heard that the ij site rxns can minimize over time. So can I hope that the sting/pain will not be as insane after a while? And how long is a while? I want to give this Rx a fair shot, at LEAST the 3 months' worth I have already received, but better the whole 6 month regimen until my next MRI. But I just don't see doing this for 6 months with this pain. My very first ij site from almost 2 wks ago is still slightly tender. I'm a wimp, I'll admit it.

Signed,

Wimpy(sore cause that's where I had my C shot)Butt.

[JadeVictoria]

Diane I have been on Copaxone for 8 months now. I still get the bruising quite often, but not the welts.

Susan sorry you are struggling. Hang in there. My shots still sting pretty much every time I do them, but I have gotten used to it. You will be amazed at how well you learn to ignore it and go on with your life. I used to ice and heat. Now I just glare at the spot and go on with my life. I did quit injecting my arms because they were giving me troubles. If you ask your neuro he/she can probably give you some alternative sights you can use instead.

I hope things get better for you both. Jade

[DianeD]

Wimpy. I've been doing this for a month and a half. The first injection hurt like a bee sting and I got a pretty good welt. The one my DH gave me yesterday (arm) has a welt about 3 inches long and raised It itches. So do my other ones.

I feel 'exactly' like you do. I want to give this a chance. So I stick (no pun intended) with it.

The pain is not quite as bad; the itching though is something that I didn't have at first.

All the sites I've injected look bad. I had an opportunity to go swimming the other day, but couldn't do it as my legs look awful (not so great anyway).

Can't imagine what I'll look like in three mos, or a year, or many years down the road.

I've tried a cortisone stick I bought at the pharmacy. Doesn't seem to work, but we'll give it as chance.

Thanks for responding. I guess it is a normal 'side effect' to get the welts Mine seem to last at least a week.

Diane

[piper]

I take Betaseron, not Copaxone but I have similar injection site reactions. The main problem area is my legs. I don't seem to have the same trouble when the injections are any where else.

Wonder if I could just skip my legs?

[youngin]

9 mos now

Hello,
I have been on Copzone for nearly 9 months. I am told I am not the "norm", but I still struggle with site reactions....that being said, it doesn't mean anyone else will still have that in 9 months. I am also giving a break to my arms and legs....not sure if that's helping though. I'm afraid I'm just going to build up welts on my hips and stomach now!
Try to hang in there, Susan and Diane. I just read a really postive article about Copaxone (the 15 year research update, I think). That made me more easily ignore the site reactions again....it isn't fun, it isn't fair, but I am deadset on PREVENTING any further progression of my MS....
Good luck!

[Komal6682]

So Glad I'm not alone!!

The shared solution nurse i spoke to last week told me that I was not in the norm if my site reactions were getting worse! Yay me! BUT Diane I'm experiencing exactly the same stuff - I've been on Copaxone religiously for two months now and am going to start my third month in the next week. It seems like the site reactions are getting worse and the bruising is so bad all over, I have coworkers constantly asking me (very delicately) if everything is okay at home meaning is someone beating me up. Funny at times but it's getting harder to be okay with it. I just took my shot a little while ago and it stung so badly it brought tears to my eyes. It's so hard to deal with it sometimes, and I'm so sorry you're dealing with all this as well but I'm so glad I'm not the only one who experiences site reactions are getting worse not better.

[DianeD]

Komal: I don't seem to get the sting as bad, but it still stings and I have some real hurtful ones at times.

The Shared Solutions people keep stressing the technique of the injection, but I do it correctly. The other day one of their nurses said if you have two inches of skin you can pinch to pinch and give it there. My arms are pretty flabby (sigh...) but my own injection nurse said not to pinch unless you were using the syringe minus the injector AND even then you need to let up on the 'pinch' as you inject.

Personally...if you google Manitol (a binder ingredient of Copaxone) you will find our symptoms. Could be that or just the severity of the medication on our systems.

Whatever, I didn't expect to look like a car wreck at this early stage. It's hard to find short sleeves 'long' enough to cover up my arms.

No shorts for me either.

Diane

[pageturner]

sites

I've been on C now for almost two years. At first the shots were very painful but it improved when I went to the autoject and changed the setting. I am thin and use a 4 everywhere except the hip area where I use a bit over 4. Ice before and after. That works for me. Everyone is different.

Things also improved for me around the 4 month mark. I read a study conducted in Australia in which the "allergic" type reactions tended to calm down at about 4 months. They used blood tests and eosinophil rates to assess this.

I never did get the huge bumps etc that some people get, but I did start to get really itchy arms.

If you look at the shot site, sometimes they take about 2 weeks to be back to normal (where you cannot tell that anything happened there). I reasoned that a shot in the arm each week, well it was just too much for that little area. So I went to EO week for the arms and there is no more itchiness.

I also inject inner thighs. Not my fav spot but oh well.

[Susanette]

I was wondering about that...

See, I wondered if ice before would be helpful, but all the literature says heat before and ice after.... I've been tempted to do ice before and heat after, frankly. I'm not terribly thin, but I've come to the conclusion that the 8 setting is too deep even when I can pinch the two inches. I've settled on the 6 for most places, except the 4 for the back of the arms. I'd try the 4 for everywhere, but I'm nervous to go too shallow. I don't get the bruising, oddly enough, but the home nurse said "no one bleeds, so you shouldn't need bandaids." of course, I bleed. =) just to be difficult, naturally!

I have to laugh. Have you guys ever seen Family Guy? My husband watches it, and on there someone hurt their knee or whatever, and sits there sucking air through their teeth and letting it out saying "ahhhhhh" all exaggerated. I rolled my eyes at the time, but now I feel like doing that every time the sting hits. And it's not the needle; that you barely feel even doing it manually. It's when the medicine gets in there really good and starts to spread! lol.

One last question: Every couple of days, it seems like when I give the shot, all the injection sites just sortof ache together, so my whole body hurts. ='( Does anyone else have this??

I've been on C now for almost two years. At first the shots were very painful but it improved when I went to the autoject and changed the setting. I am thin and use a 4 everywhere except the hip area where I use a bit over 4. Ice before and after. That works for me. Everyone is different.

Things also improved for me around the 4 month mark. I read a study conducted in Australia in which the "allergic" type reactions tended to calm down at about 4 months. They used blood tests and eosinophil rates to assess this.

I never did get the huge bumps etc that some people get, but I did start to get really itchy arms.

If you look at the shot site, sometimes they take about 2 weeks to be back to normal (where you cannot tell that anything happened there). I reasoned that a shot in the arm each week, well it was just too much for that little area. So I went to EO week for the arms and there is no more itchiness.

I also inject inner thighs. Not my fav spot but oh well.

[pageturner]

susanette

My neuro told me ice before and after.

Shared solutions said warm can give a feeling of 'well-being' . Well not for me. The ice before and after has been great.

I did manual at first and it was terribly painful. The SS nurse said try the auto thing so I did.

I do bleed once in a while, I suppose I hit a capillary or something. It's not like a nose bleed or anything that dramatic, but there is blood sometimes.

I also apply pressure for a few minutes afterwards (started doing this a few months into it) and it REALLY seems to help. Then after that ice for a few minutes. Sometimes not at all. My abdomen isn't painful at all. Funnily enough it was one of the sites I was most squeamish about, but it turned out to be the easiest of all.

Earlier on (not now), there were times when I had achy spots esp. when I tried to find a comfortable position to sleep. Also esp when I did the arms every week.

Now I kiss the syringe every night and tell it to go do its job.

[FutureHope]

Shared Solutions

Copaxine through Shared Solutions provided a nurse to train me to use the shots, and about how to treat reactions, including which may require a call to the doctor. They also offer phone advice by a nurse- all of this is FREE. It may help you.

[DianeD]

Done all that stuff!

Future Hope; sure I've called Shared Solutions; they are nice, but don't really have anything much to say I haven't tried.

Also had training on how to inject.

The doc? C'mon. Yes, I've called and it takes about two hours to hear back (also to get through all the intermediaries docs have). The doc doesn't call back. His nurse does and she doesn't give me the feeling she particularly cares or gets what I'm saying.

Who knows what she tells him!

I wonder if anyone has just stopped doing the injections?

Frankly, I can deal with the injection site reactions, but not the feeling worse than when I began C. I was kind of starting to have some energy just prior to starting C and now I can barely keep awake during the day.

This is awful.

Diane

[justacowgirl]

Week 10 for me on Copaxone.......I really bruised and had welts initially...

Now I leave out a week's worth of C at a time so it's at room temp...take a hot bath (hot doesn't seem to bother me) and inject immediately after the bath and ice afterwards. No bruising anymore..minimal pain.

I am NOT a skinny girl but I do everything on 6 and a little under 6 and it helped alot. (I must have skinny skin)

I think you can minimize the reaction if you find a method that works for you. It did take a few weeks to figure out what worked.

Don't give up.

Justacowgirl

[Sugarbear]

help

i'm a 45 year old mom of 3. i was dx'd w/ ms 6/11/2010. i'm taking my 6th shot of betaseron today....actually only a fourth of it. i'm reading all the posts and thinking please tell me all this gets better and not worse. i'm scared to death. i know none of us ever thought we'd be like we are today.if anyone is taking betaseron and could tell me what it's like for you i'd like to know.