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Old 06-14-2010, 04:15 PM #1
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Default Anyone try Copaxone?

My neuro wants me to try it because the Rebif was making me really ill, and I kept walking into walls and doorways...can you please tell me about your experiences with it, and if I should shy away from it or not? Thanks! And, it's good to be back...have been having my own issues with foot problems and surgery on it...am doing better again...ever since I stopped the Rebif and it got out of my system...I'm kind of gun shy at this point, but willing to try it if it will help keep me from walking into walls and tripping and dropping everything...I sound like an ad for MS right now...LOL...
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Old 06-14-2010, 06:37 PM #2
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My experience with Copaxone has been a good one. I've been on it over 5 years now. In the six months before it I had 2 flares in the 5 years since none. Although there are subtle signs of MS progression my MRIs remain stable and I have been able to continue working two jobs which is very important to me.

I have been lucky in that the only down side is localized site reactions, some painful but not a problem in the big picture. I do have some dents in my thighs but as 45 even though I'm still in decent shape no one deserves to be subjected to my upper thighs anyway.

Now plenty of people that are anti-medications will say that I have no way of knowing for sure if this is working or not and thats cool. I'm going to stick with it until my MRI/symptoms drastically change or something considerably better comes along. Good luck with whatever you decide.
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Old 06-14-2010, 06:46 PM #3
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Hi Jewels.

Copaxone was a breeze for me, no cite reactions and no heart attack-like, side effects. I stopped it, after10 mos, because it didn't seem to be helping me, but different strokes for different folks.

Good luck with it..
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Old 06-14-2010, 08:05 PM #4
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I took it for five years and will be going back. I really did a lot better on it than off...and we are hoping my sx will calm down once I start back. I didn't have any side effects, I took it in the morning. I was probably too busy to notice.lol
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Old 06-14-2010, 11:54 PM #5
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Or you could wait to try the new oral DMD that will be out in September. Give your body a rest till then.

I think Natalie said that in her thread on here:
http://neurotalk.psychcentral.com/thread124723.html
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Old 06-15-2010, 03:08 AM #6
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I tried C for almost 2yrs. I had a ton of side effects.. No clue if it was working for me tho. I think I've had more exacerbations since quitting it, but I was having exacerbations a lot during the time I took it.

The side effects just were a bit too bothersome for me, and the fact that my neuro ruined any of the (little) faith that I had in the drug that I just quit right about this time last year.

I still have four boxes in my refrigerator. I wonder how long it's good? (I was always four boxes behind because of a lazy injection training nurse who didnt show for three months)
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Old 06-15-2010, 06:56 AM #7
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I've had great luck with C. Rebif was really bad for me too and I switched to Copaxone after only five months on Rebif.

I'm doing very well now and have always when taking C. It has a nearly 20 year track record for safety now which is a plus too.

I asked my neuro about the oral meds and he said that since C is so safe and works for me I should just stick with that and I agreed. Good luck and let us know what you decide to do.
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Old 06-15-2010, 07:10 AM #8
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I have not enjoyed C like everyone else. While on it, I am more fatigued, and have headaches, and tummy troubles. I get lumps, and dents from it too. I am told that it made a difference in my MRIs and that I am being kept stable on it, but I am struggling with it.

In the early days, it has a bee sting bite to it, but that goes away with time. it can also leave an itchy lump, but that too goes away with time. Also some folks need 6 months to a year before they know if C is working for them.

75% of the folks who take it, have no real issues from it, and most really like it, cause it doesnt make you feel like you have the flu.

I hope you are able to find something that works for you. I couldnt take Beta as it made my liver go crazy. C is a last resort for me, so I hesitate if I am going to stop or stay.
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Old 06-15-2010, 03:47 PM #9
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I just had my second try with it a couple of months ago. The first time I was on it I had really bad site reactions so I had to stop.

I tried it again in January and after a week of injections I went into anaphylactic shock and had to be rushed to the er. The doctor told me not to EVER take it again.

This is a rare reaction from what I've read but I did find it in the tiny print on the package insert. I wouldn't discourage anyone from trying it. It seems to be the most innocuous of the DMD's.

Good luck !
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Old 06-15-2010, 03:47 PM #10
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i've been on C for 7 yrs without incident.
my mri's have been stable.

i couldn't take the interferons and C isn't an interferon.

good luck. it's worth a try. it may take up to 8 mos to get your blood levels up on this med. just remembered that about it.
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