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8th week of copaxone....blaaa

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  • 22-05-2011 8:34pm
    #1
    trishawisha
    Registered Users Posts: 145 ✭✭


    Well i am starting my 8th week of the daily joys of copaxone tomorrow. It doesnt seem to be getting any easier. My MS nurse was here last week and was discussing how to improve those nasty injection site lumps. It has improved them, but she said because of all the lumps, the medicine probably wasnt getting to the correct area. wtf?
    Anyone out there been through the joys of copaxone?


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    #2
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    Lumps are just a reaction to the injection. Put an icepack (covered, so you don't get an iceburn) on the injection site before you inject. You can massage the site gently once the deed is done. I always took paractemol before injecting-maybe an hour or so more.

    The sites usually settle down in time, be careful to avoid injecting any lumpy bits.


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    #3
    trishawisha
    Registered Users Posts: 145 ✭✭trishawisha


    Hiya thanks for the advice, I just wanted a moan.:)


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    #4
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    Moan away.I was on betaferon for a good while. Left awful bruises on my arms and legs, couldn't understand why people were gving my husband filthy looks on the beach for a bit.:D


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    #5
    ElleEm
    Closed Accounts Posts: 3,981 ✭✭✭ElleEm


    I'm 6 months on Copaxone now. The sites seem to react differently in different places for me- so much so that I can't do my thighs or bum. The reactions are different all the time, sometimes I have the lumps for days and they can be mad itchy.
    Difene gel helps for the reactions but I've just gotten used to it all now, so barely use anything.
    I've started injecting before bed so that the reaction doesn't bother me as much.
    One thing I will advise is to properly exfoliate and moisturise so that you're keeping that area supple.


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    #6
    trishawisha
    Registered Users Posts: 145 ✭✭trishawisha


    Wow ellem 6 months its a long time when you think about everyday injections. Im sure Ill get there. Its just annoying not knowing how it will react. Iv been using neurofen gel for the last few days, is difene better?
    If you're not doing thighs and bum surely theres not much time difference in your sites. Im not doing arms or top of belly.
    Its all trial and error as my nurse keeps saying :)


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    #7
    ElleEm
    Closed Accounts Posts: 3,981 ✭✭✭ElleEm


    trishawisha wrote: »
    Wow ellem 6 months its a long time when you think about everyday injections. Im sure Ill get there. Its just annoying not knowing how it will react. Iv been using neurofen gel for the last few days, is difene better?
    If you're not doing thighs and bum surely theres not much time difference in your sites. Im not doing arms or top of belly.
    Its all trial and error as my nurse keeps saying :)

    I think they're both the same. Both were recommended to me by my Copaxone nurse but I just picked Difene myself.

    I tend to use my hips and belly all the time. Every 3 weeks I might do my bum, but the pain is SO bad! It really feels like a nerve is being hit or something. I don't know if it gets easier- I think you just get used to the pain, itch, lumps etc.


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    #8
    shtopthelights
    Closed Accounts Posts: 44 ✭shtopthelights


    I presume Copaxone is a sub-cutaneous injection, as Betaferon is? I used to be on betaferon and forgot my auto-injector when I went on holiday once and had to self inject, which I was a bit wary of, but once I did, I found it way better and much easier than I'd presumed it to be, with little or no bruising or pain at the sites afterwards. I never went back to using the injector afterwards (there was no comparison!). Incidentally, it also made me feel happier about injecting, like I was more in control of the process


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    #9
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    The auto-ject for betaferon is quite stiff and makes a bit of a bang so yes, it is easier without it, I found.


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    #10
    trishawisha
    Registered Users Posts: 145 ✭✭trishawisha


    The nurse told me that if the reactions keep happening the next step would be self injecting. I dont know if I could do it. Its such an ordeal already. I suppose you just do what you have to do when it comes down to it.


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    #11
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    trishawisha wrote: »
    The nurse told me that if the reactions keep happening the next step would be self injecting. I dont know if I could do it. Its such an ordeal already. I suppose you just do what you have to do when it comes down to it.
    I used to do it myself if my husband was away. Procedure as follows:
    1)Take paracetomol. 2) Place covered icepack on site. 3) Have a large glass of wine. 4) Text some friends who have experience with injecting the horses who were on standby in case I got chicken and tell them if they didn't hear from me in ten mins that I had done the deed.5) Inject, for fear of the women having to do it for me. 6)More wine.

    Worked well for me:D


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    #12
    trishawisha
    Registered Users Posts: 145 ✭✭trishawisha


    Haha I like your thinking!:D


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    #13
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    The paracetemol for flu symptoms also good for excessive wine consumption...:p


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    #14
    Flopsy
    Closed Accounts Posts: 5 ✭Flopsy


    I was on Copaxone for 4 weeks and absolutely hated it! The nurse coudn't have done any more for me she was so good but I refused to take it again and went to see my neuro about changing it. He was really good about it and gave me a few weeks to get over it (he thought maybe I was allergic to an ingredient) and then started me on Avonex.
    3rd week of Avonex and really impressed with it! It's the intra muscular injection once a week, which scared me to death but it's actualy ok!

    Hope it gets better for you. Copaxone isn't a easy option - give yourself a clap on the back. At least you're doing all you can to take back a bit of control!! ;)


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    #15
    trishawisha
    Registered Users Posts: 145 ✭✭trishawisha


    Hi Flopsy, are there kindof work prohibitive side effects to Avonex? As in are you able to function normally with it? Thats my biggest worry with regards changing over to something else.
    Glad to see your doing so well :)


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    #16
    Flopsy
    Closed Accounts Posts: 5 ✭Flopsy


    Sorry for the late reply!

    I have absolutely no side effects with the Avonex which is very unusual! I'm shocked because I usually react to everything LOL. I have two small children and the side effects of Interferons put me off them, that's why I initially opted for Copaxone.

    My take on it is that MS is God awful, so why be stuck on a therapy that makes you feel God awful? I HATE needles and was as white as a ghost looking at the Avonex one but it honestly, hand on heart didn't hurt one bit!

    xxx


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    #17
    femur61
    Registered Users Posts: 1,588 ✭✭✭femur61


    I'm on betaferon 10.5 years and although I hate the injection because the site can be sore and have to be careful not to inject in the same place for at least 6 weeks. Now they have an oral medication for MS so am delighted, light at the end of the tunnel.


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    #18
    trishawisha
    Registered Users Posts: 145 ✭✭trishawisha


    Hi Femur! My copaxone nurse said that the oral medication will be used as the VERY last resort for MS people ( I had asked her looking all hopeful :))
    I dont know why, but wow 10.5 years!!


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    #19
    ElleEm
    Closed Accounts Posts: 3,981 ✭✭✭ElleEm


    trishawisha wrote: »
    Hi Femur! My copaxone nurse said that the oral medication will be used as the VERY last resort for MS people ( I had asked her looking all hopeful :))
    I dont know why, but wow 10.5 years!!

    Oh no!! That's terrible news. I have an appointment with my neuro soon and was hoping to go onto the oral med. I'm SICK of injecting :(


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    #20
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    Oral med not approved for Europe yet I think?


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    #21
    trishawisha
    Registered Users Posts: 145 ✭✭trishawisha


    Ellem.... She may have just said that to me to get me to give the injecting a good try?

    byhookorbycrook....I asked her when it was coming to Ireland, she said it is scheduled for September. Who knows though...


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