starting copaxone

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I am in the process of getting started on Copaxone. The info talks about feeling like you can't breathe. Have any of you experienced this and does it sound worse on paper than in real life?

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  • ebbtime
    ebbtime Posts: 35 Member
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    I have been on copaxone. The only side effects I had were the "normal" redness of skin at needle site. And all that goes with sticking a needle in your skin. None of the other things it warned. I was on it for a year, I believe, & only switched to Betaseron cuz I thought copaxone was causing me to gain weight. It didn't....silly me....it was FOOD! And you REALLY have to keep good track of inject sites. That was a pain for me. I've been on Betaseron for 7 years with no relapse, KNOCK ON WOOD! Hope it works for you. Don't be afraid of the warnings. But do be prepared.
  • flyguy767
    flyguy767 Posts: 3 Member
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    I have been on Beta seron for 12 years and no relapse. Not sure about Copaxone, but the symptoms described for Beta were over rated.
  • grantsmom08
    grantsmom08 Posts: 82 Member
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    Hi! I have been on Copaxone for just two weeks. I haven't had anything more than the injection site normal reactions. Listen carefully to what the nurse tells you. Stay within the zones. My nurse even said if you are emotional, anxious, rushed, to put it aside and wait until you are in a better state of mind. That being tense could affect things. My sister has been on it for years and hasn't had the horrible reaction.
    I read many stories and they scared me too before starting. But I truly believe doing it correctly in the right zones will keep it from happening. I get up and walk around after injecting so I don't focus on it. Feel free to friend me if you would like as we are both new to the meds :)
  • TeraJo
    TeraJo Posts: 58 Member
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    I just started copaxone on Friday, three injections down!
    The nurse that came out was absolutely wonderful and did a great job teaching me how to inject and where. There are 7 regions and then multiple zones within each region for the injections. So far I have done both top thighs and my stomach. The needle didn't hurt, but I did feel a stinging afterwards. The ice pack for 5 minutes really helps.

    My nurse told me that the chest tightness, feeling flushed, etc can be attributed if you go too "deep" with the needle and you injected the medicine either in your muscle or a blood vessel. She said if that should happen deep breaths, stay upright and it should totally pass within 15 minutes. But it happens in less than 5% of all patients! Try not to worry.

    Best of luck and let me know if you have any other questions!

    -Tera
  • Benji49
    Benji49 Posts: 419 Member
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    I've been on Copaxone for about 1.5 years now. Make sure you rotate your sites, the worst spot for actual soreness is my arms and I tend to bruise there as well. I have a couple of times injected in a blood vessel - kind of hard not to as I have varicose veins as well - and the stinging last a little while - but it goes away. No other side affects and I feel 150% betten than I did on Rebif.
  • Tariagain
    Tariagain Posts: 6
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    Thanks so much for all your input. I started the copaxone five days ago and things seem to being going fine. Shared Solutions asked if I had a support system available to me, thanks to you all I was able to say "yes."

    Thanks so much!
  • grantsmom08
    grantsmom08 Posts: 82 Member
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    Hope it continues to do well! I have just @ 5 left in my lockbox (which Shared Solutions can send for free, especially if you have kids to keep out of meds lol) and I will have completed a month. I am so thankful for not only having the weightloss support but now to find and talk with other MS people! :)
    Best of luck to you all! Feel free to add me!
  • lessofme65
    lessofme65 Posts: 107 Member
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    I've been on Copaxone about a year and a half and haven't had a single exacerbation since starting it, I'm very pleased. I rotate my sites. Some time a little sting, itch, swelling but it goes away. I keep a benadryl topical treatment that the nurse recommended handy and it helps alot with the itch. I've been diagnosed since 2005 and this is the most success I've had with a medication. I failed on Solumedrol, Avonex, Tysabri and Novantrone over the years. This one is a keeper for me.
  • Sinisi2012
    Sinisi2012 Posts: 333 Member
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    I did Copaxone for the 1st year, the only side effect I had was site reactions which ultimately was the reason I swithced. They were horrible! Then I did rebif for 8 yrs, horrible headaches were the only side effect. Since Jan of this year I am taking the oral med Gileyna and (knock on wood!!) no side effects whatsover. I feel so free not having to take shots anymore :happy:
  • Tariagain
    Tariagain Posts: 6
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    Things are going well with the Copaxone for the most part. I have more trouble keeping all the mental stuff straight in my mind and really no trouble with the actual injection. My regular doctor (not neuro) says they are working on getting it into an oral form---can't wait!

    Again, thanks for all the support.
  • melizerd
    melizerd Posts: 870 Member
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    My husband has MS and he was on Copaxone for about 2 years. He had the heart racing panicky feeling once, and it was way into his treatment. So it can happen at any time. Just don't panic if you start to feel it happen. Sit down and breath. It usually goes away in less than 10 min.

    He switched from Copaxone to Rebif 3 1/2 years ago now and has had less relapses since being on Rebif.

    He was diagnosed in Jan 2006. It's what made me decide to go back to school and be a nurse! I'm only 3 semesters away from graduation now.
  • pten0pus
    pten0pus Posts: 25
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    I started on Copaxone yesterday and ate everything in site, was emotional as all get up, weak, and have been nauseous on and off. Has anyone else had major side effects with it?
  • kawolk
    kawolk Posts: 4
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    I have been on copaxone for a couple years the side effect you are referring too is rare but i have had it happen more than once you feel flushed and like something is sitting on ur chest and like blacking out the first time it was scary as hell after that i knew what to expect and could tell when it was coming it only lasts a few seconds so i could just tell myself i wasnt dieing and it would be over soon and it wasnt as bad anymore hopefully its not something you will experience tho