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Considering Switch to Cpaxone...Need Advice


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Old 04-13-2006, 07:27 PM   #1
Annie Nichols
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Considering Switch to Cpaxone...Need Advice

Hi All,
I have been om one of the injectables since January of '88'. Other than a six month stint on Rebif I have been taking Betaseron. For the past year, though, I don't think the Beta is helping very much. I live in Arkansas and have only found a specialist and he hasdone the anti-body test but I am waiting for the results.
The advice I need is what to expect when I begin taking the Copaxone. And what tips y'all can offer on how to handle it.
Thanks in advance!
Annie

 
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Old 04-14-2006, 07:59 AM   #2
Avenue Q
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Re: Considering Switch to Cpaxone...Need Advice

Hi Annie Nichols, I have been on Copaxone, now since January, 2004. And my experience with using 'copaxone' <>'I never any had any side effects', what-so-ever and of course, we all handle meds differently. But I have never heard anyone say, very much different, other then, a little bumping, or swelling directly at the site of the injection. But there isn't the problem with flu-like symptoms, as there is with other drugs. But that's only my two cents.
Annie, I hope, you'll find the answer, that will satify you, with your search. Good luck

 
Old 04-14-2006, 11:45 AM   #3
orngcrayon
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Re: Considering Switch to Cpaxone...Need Advice

Hey Annie! (this is long - but stuff I wish I'd known!)

I've been on copaxone since Sept 05, and I've had just about every side effect you can have - and I still wouldn't want to switch Copaxone doesn't cause depression or flu symptoms, and doesn't interfere with your kidney and liver function at all. It's every day, but its sub-q and really easy to take.

Now, for the down sides... at first, I had really bad site reactions. Immediately after the shot I had swelling and red puffiness aorund the injection site. This usually disappeared within an hour or two, and I found that by adjusting my needle depth (to go in deeper), this happened less frequently. So if you use an autoject, don't be afraid to play with depth - and you may need to adjust the depth depending on where you're injecting (I go deeper on my hips than I do on my arms). And, i've found that giving the injection by hand when I can (stomach and legs), I have fewer site reactions.

Other site reactions are LUMPs - for me these were hard, solid, and the size of a baby's fist. They were painful for a few days after the shot (no one told me they would hurt!). Massaging them 24 hours after the injection helped them go away a little faster. And, I always have a little bruising/discoloration at the injection site.

The good news - these ALL stopped happening after I'd been on the meds for a few months. No more lumps, very little swelling...and only slight discoloration. HURRAY!

Now the really bad -(chances are this won't happen to you). I've had that rushing, anxiety-attack like side effect 4 times in 4 months. You can read about it all over the copaxone packaging. Supposedly only 10% of people get it, and my neuro says it doesn't happen to people more than once . It happens when the copaxone gets into your blood stream. So if you pull the needle out and you see a LOT of blood, watch out. It's kind of like an asthma attack - my face, chest and arms get flushed, I start sweating, I can't breath... but it goes away on its own in about 10-15 minutes. You just have to keep breathing through it. Right after the attack I go right to sleep, and there's no waking me up. It's scary, and disrupts that day - but its not that bad... and I've only talked to one other person who's had it and it only happened once to her in 11 years. One good way to prevent this is to Ice your injection site BEFORE the injection (it makes the veins constrict).

If you have ANY questions, feel free to ask. I feel like I know Copaxone pretty well! =)

 
Old 04-14-2006, 04:37 PM   #4
lilc
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Re: Considering Switch to Cpaxone...Need Advice

Hi, Annie. I've been on Copaxone since November 05. I haven't tried any other CRAB meds. I chose Copaxone because I still work and lead a pretty hectic life, I did not want to deal with side effects. Here's my two cents worth:
At first it was like a daily bee sting, but within a couple of weeks I barely noticed the injections. I haven't had bumps/lumps. I have hit a vein a couple of times, but have never had the rushing/anxiety thing (and I tend to be anxious anyway). I have had another problem, and I think it is more related to injecting than to the drug itself. I have some lipo-atrophy (aka fat necrosis) in my arms and legs. It isn't horrible, but now I'm very careful to ice the site before and after when I do my arms and legs, and to massage the site a day after the shot. So far so good!
Most importantly, I actually think I'm having less cognitive difficulty than I was, and people have told me I seem better! I know it isn't supposed to help symptoms, but that's my story. Haven't had another MRI yet, in a couple of months I guess we'll see how the lesions look!

 
Old 04-15-2006, 01:36 AM   #5
Annie Nichols
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Re: Considering Switch to Cpaxone...Need Advice

Thanks everyone for your input!!!!!
All in all it sounds like the beginning side effects are a LOT less than I had with the Beta or the Rebif. So...I'm gonna give it a shot (sorry for the pun...LOL). The tips on massaging and icing I will definitely try from the beginning.
I have been on an anti-depressant since April of '98 and I HATE taking the darn thing. I cannot wait to be back to normal with no depression! And 8 years of the flu symptoms I can definitely do without!
Thanks again! I am SO glad that I found this board!!!!!
Annie

 
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