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#1
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So I was diagnosed last October and have finally arrived at the MS Clinic. My Dr. is recommending Copaxone. I've been doing research but I want to hear from those who are actually taking this or have been. He did give me a steriod dose in June since according to him I was having a relapse. As of now I'm taking natural supplements. I go back Aug 17 and need to make a decision. Advice??
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Whatever does not begin with God will end in failure. |
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#2
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I took Copaxone for over three years and loved it. Maybe "love" is a bit strong for a daily shot, but it was super easy, didn't hurt much (some days not at all), and had zero side effects. I think it is a good first-line drug, especially because you don't have to worry about antibodies, liver issues, flu-like symptoms, or thyroid levels--all potential issues with interferons.
That said, all of the meds on the market today have their plusses and minuses, and I'm sure you'd find avid supporters of all. Well, except for maaaybe Avonex. I don't personally know of anyone who has taken both Avonex and another MS injectible drug (Betaseron, Copaxone, or Rebif) who preferred Avonex, even though it is only once a week (albeit with a big-honkin' needle for IM). But now that I've said that, I'm sure I'll hear from someone!Just an FYI with Copaxone, it will sting for the first month or so. That goes away. Don't get discouraged and keep at it!
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Dave Bexfield ActiveMSers |
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#3
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I went on Betaseron first... I was one of those people who went into almost immediate depression and my liver function tests started getting weird. I can't remember if it went up/down - just know with those 2 things I only lasted 2 months on it.
I had to wait 6 weeks and then I went on copaxone. I've now been on it for 2 years, 5 months and counting. I've had no new lesions since my Dx almost 3 years ago and I've actually seen a reduction in some of the daily symptoms I was experienceing (halo effect in my ON eye and spasticity to the point of severe leg spasms with feet/hands drawn and locked in). When you start - the site injection reaction sites will hurt like (@*#&$KAHF hell and mine required baths in benedryll cream!! This will go down in time, I promise! |
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#4
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i started copaxone on 3-16-09 so its been like 5 months...i dont know how long these reactions are supposed to last but i still get them. I get huge red hot, raised circular bumps 7-8cm across. They itch and are embarrassing when people notice the ones on my arms. The reactions only last a day and disappear but they really suck. I would not say they are a reason not to take copaxone. Other then the site reactions i have NO problems!! no flu like symptoms that some other injections have. Just be ready and dont be surprised if you get a reaction. As far as how well it works i have one exacerbation in the 5 months of taking copaxone
so i guess we both just have to wait and see.... |
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#5
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Lizz, that's funny I started Copax on 3/17. (Happy St. Patrick's Day!) I was on Rebif first, but my liver enzymes went through the roof. I still get the site reactions, though much better in the past month or so, depending on the site. Had a mild exacerbation at the end of May. I'm hoping it was the copaxone keeping it mild. We'll see in Oct when they do the next MRI.
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#6
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hahaha misspenny seems like we have very similar stories!! good luck!!
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#7
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Caitlin w/PPMS, no exacerbations ever and I do the copaxone macarena to keep track of my site rotation! My only side effect? Bruising at sites ... and now and then a bump ... but also, no new lesions! Go for it!
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#8
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copaxone macarena i like that!!
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#9
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I was initially on Avonex for a bit over a year. I hated every injection- felt terrible for 24 hours, became depressed, dreaded injection day, couldn't give myself the injections.
Switched to Copaxone. Some injections were fine, and some created this allergic type reaction- swelling, redness, itching. This is all normal and icing before the injection seemed to help. After a while the reactions became less frequent and basically stopped. The sites did leave a hard knot for several weeks. I couldn't use my arms or fronts of my thighs very often because I didn't have enough fat there. I used my hips and lower abdomen most of the time. This worked fine for several years. Last year I developed an infection in the fat layer in my abdomen. After antibiotics and no injections for a month, it cleared up only to return when the injections started again. I am currently off meds and being monitored with MRI scans. I don't know which med will be in my future. If you can use all the injection sites and rotate, I think Copaxone is great. It didn't make me sick or depressed. I would definitely use Copaxone over Avonex. Don't know if Betaseron makes you feel as bad as Avonex did. |
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#10
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I was on Copaxone for almost five years and mostly agree with the posts. Definitely doesn't have the side effects of the interferons, needle is small and easy to get used to. But I also have a caution. I rotated injection sites pretty well, but still developed huge divots in my legs, hips, and stomach where I did the injections. Over time the medicine just seemed to eat away at the tissue/fat layers between my skin and muscles. A couple of years ago I took a fairly small crash on my snowboard and tore my abdominal muscles, eventually having two different hernia surgeries. Docs figure the injections/medicine weakened the muscles and led to the blow out. So this, combined with some relapses, led me to investigate alternatives. I'm now on the Campath trial, feeling awesome!, and getting acupuncture (cupping) and massage to try and get my legs back to normal. I definitely don't regret using Copaxone, but I came to learn that it is not the panacea/wonder drug I first thought it was.
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