Experiences with Copaxone

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Postby Fern » Thu Mar 29, 2007 6:36 am

Catherine, it sounded like you might be talking about me becus i was one of the last people making a response to the original post, trying to help another person(s) make less painful injections with the Copaxone.

There's nothing wrong with speaking your mind, but hopefully we can all do it in such a way that we don't unnecessarily hurt others in the process. We've all had our challenges to deal with.
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Postby Wonderfulworld » Fri Mar 30, 2007 2:34 am

Hi Catherine
it sound like you've really been "through the mill" in the last while, a lot of stuff to deal with, my heart goes out to yuo.

I think the point is that all of us here (well, 99% I suspect are genuine ms-ers) have a LOT to be angry about, MS is a disease that makes most of us angry at some point.

But not much point being angry at other MS'ers, we have enough to deal with.
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very bad efects

Postby superman » Thu Apr 05, 2007 1:45 am

Hello
I have been on Copax for 6 months now.
Yesterday i have had a "bad trip". Right after my injection, i had some difficulties to breath, i even shouted for help, since i was quite scared.
Then i felt a bit better and went to bed. My body then began to shake, which reminded me some scenes of "the Exorcist".
At the beginning it was just my teeth and then all my members although i had put two blankets.
and later, i vomited(was it the :twisted: in me ?
;-)
I know these are amongst the Copaxone common bad effects, but could anybody tell me whether they've had the same effects?
thanks
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Postby Shayk » Thu Apr 05, 2007 6:26 pm

Superman

I've been on Copaxone just over 5 months and so far I haven't had a reaction or side effects like that. I hope I never do either but I always think it's a possibility.

I think it's the :twisted: in you. Just kidding of course.

Take care and hopefully it won't happen again. It definitely sounds scary.

Sharon
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Postby superman » Fri Apr 06, 2007 1:24 pm

Hi again
sorry to have scared some of you.
Just to inform i have called Copaxone helpline, they told me that all the side effects i have felt,could happen.
She told me also that they do not happen so often and that in some cases they happen once or twice and then never appear again.
Also as she said they can be really scaring: she reported that some of her patients felt like dying(sorry i'm really not the right guy to make u feel confident :roll: ) but they are not dangerous at all.
and to conclude she advised me to call my neuro to have an other opinion, which i did.
These latter told me .....
to stop copaxone until our next appointment in 1 week, letting me thing i should be on Tysabri soon.
Of course my case is one amongst many other so do not take it as an example :!:
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Postby agate » Tue Jul 17, 2007 3:00 pm

I've been reading through this thread as part of adding to my little collection of Copaxone reaction stories. I just recently started Copaxone.

I can't help wondering how superman is doing now.

I don't have any horror stories yet, I'm VERY glad to say. After about 6 weeks on Copaxone, I haven't missed a shot, and have had no significant side effects other than burning and a bit of pain shortly after the shot, and large lumps that more or less go away after a day or two.

This shot is so easy compared to Avonex, which I took for 3 years. Of course, I might be singing a different tune if I ever have a reaction like some of the reactions described in this thread.
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Postby craftykate » Sat Aug 25, 2007 6:58 pm

I just joined this forum and I read curiosers' post. I am so sorry you went through that, but, I am much relieved to read that what you went through is almost identical to what I went through with Copaxone.

I was on it for nearly 5 years. On average, I was having the post injection reactions maybe once a year, then, once every six months, then every couple of months and then in December 2006 I had a reaction four days in a row and they were identical to what Curiouser went through. And I had hives with them.

After the last reaction (mid December 2006) I went off Copaxone, on my neuros advice.

Since then I have had 2 bad MS relapses (I only had one mild one the whole time I was on copaxone).

I had paralysis on the right side of my body in March/April this year and I am currently recovering from Optic Neuritis (will be 5 weeks tomorrow since it started).

I am currently on the trial for Firtategrast (oral medication). It is ok so far, no bad side effects.

I can never take Copaxone again. It was an excellent drug for a few years for me, but, once I started getting the horrendous post injection reaction almost every day (despite being told the same thing as Curiouser, that the reaction is rare), no, I can never take it again and my neurologist agrees.

Cathie
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Postby RedSonja » Mon Nov 26, 2007 4:00 am

All these horror stories would make me fell bad, if I were not already a Cop user. I started using Cop 2 years ago - or is it three - and am quite happy with it. To start with I had swellings like wasp stings, then small swellings like mosquito stings, but these days I hardly notice. Using the autoject helps, so much better than jabbing by hand. Also, now I can inject hips-and-thighs, they don't seem to mind, but then I have plenty of fat to inject into. I got the autoject because my stomach was full of hard spots. Now they are all gone.

Everyone's MS is different, so everyone reacts differently to the medications, if Cop doesn't suit you you can try something else.

I am looking forward to the day when they have oral Cop, all the same.
Bibo ergo sum
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Postby craftykate » Mon Nov 26, 2007 8:52 pm

I am really glad it works for you Red Sonja, that is great.

I did not want to scare anyone with what I wrote, which is why I made it quite clear Copaxone is worth trying. Honestly, if I could take it again, I would, but, I can't.

But, I do believe that by not stating my experiences on it is not helpful either. It did happen to me. It has happened to others, but, it is rare. If it does happen to someone and they do not know it could, it is terrifying.

The first time I had one of those reactions I called an ambulance. I thought I was dying.

After the first time and knowing what I could possibly go through and that I won't die from it helped me the next time it happened.

Again, I say, if you have the chance to try Copaxone, do it. It worked great for me and I was able to tolerate it for nearly 5 years, in that time I was mainly relapse free.

It is the best MS drug I have ever been on and t is only since I was forced to go off it that I have been so sick. I have had a dreadful year with MS relapses and honestly, if I could go back on Copaxone again, I would, for sure.

I had an appointment with my neuro, just today and we discussed medications.

I will more than likely being going on a Tysabri drug infusion trial in January.

Hopefully this will work for me.

Cathie
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Postby SunnyDay » Wed Apr 22, 2009 12:48 pm

I starting taking copaxone after my diagnosis in October of 2007. I have not had any relapses or side effects. So far things are good. I get some slight injection site reactions like bee stings, but nothing that would make me want to stop taking the therapy.
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Postby turtle_fi » Thu Jul 23, 2009 2:47 pm

I got my dg at 2008, and started copaxone in March 2009, so pretty soon I'm going to 6 months checkup. It is very painful sometimes, sometimes it does not feel that much, but I usually get 30 mins of pain after injection (I inject manually since autoinjector looked complicated and error-prone, so I thought I have to learn anyway the manual way)

Around a week ago, I got an odd feeling right after the injection. My husband was not inside, and I barely was able to walk (I have no walking difficulties) to sofa and call him, luckily he was near and heard. I was breathing quicker than I have never done and sweating a lot. feeling was a bit like radiocontrast agent inserted to vein (going around the body in circulation), so I was thinking, is it possible I accidentally injected to my vein in stomach? the quickness was scary. i would not like to inject alone anymore.
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Postby patientx » Thu Jul 23, 2009 4:38 pm

Turtle_fi:

Did you feel any tightness in your chest? I wonder if it's possible this was the dreaded IPIR.
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Postby turtle_fi » Fri Jul 24, 2009 10:04 am

I don't remember tightness in chest, just that breathing was really really fast, never experienced anything like that. I don't remember feeling any odd sensations in heart. got really scared though.
I'm sorry but I don't know the slang yet, what is IPIR? (hmm.. maybe there is some dictionary here someplace.. *goes looking*)
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Postby patientx » Fri Jul 24, 2009 11:55 am

Sorry, IPIR stands for Immediate Post Injection Reaction. It sounds like you were trained by a nurse to do the injections, so she probably described this to you. I haven't had one, but it was described to me that it feels like having a heart attack.

It sounds like you may be having some other reaction.
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Postby bab3 » Sat Oct 17, 2009 8:21 am

if copaxone is helping please dont give it up i did four years ago and from walking i went to using 2 crutches, i got a bad poster and weak legs now and feel that i have become much much worse :? i wish i didnt stop but it was getting painefull at the injection sites i wish i used the autojet
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