A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Starting Copaxone

Discussion in 'General Treatment' started by MartinDH, Dec 2, 2018.

  1. MartinDH

    MartinDH Senior Member

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    I will get my first dose tomorrow. Bit nervous because of the possible side effects.
    I or @MichaelK will keep you up to date about what’s happening... if sth happens...
    big mystery with Copaxone, this story of Rachel and no reaction from Ben on this topic... and there must be a reason why Whitney doesn’t get it... maybe because they fear an allergic reaction and he could not stand that or: it’s all a lie and it didn’t work with the nanoneedle...
    What do you think?

    Your
    Jonathan Frakes
    C5E8FBB9-73DE-410A-8C19-FB90286DD7DB.jpeg
     
    Last edited: Dec 2, 2018
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  2. Silencio

    Silencio Senior Member

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    I would have thought Jonathan Frakes was before your time!

    How did you find a doc to give this to you Martin? I just saw your hospital thread.. did you end up going into hospital?

    I live in Portugal and I have found a hematologist who wants me to come in to hospital for 5 days for more tests. But she believes this is biological, and never questioned that. Dreading it though, although I am stronger than you and think I can tolerate it.

    I am nervous about drugs as everything makes me crash. Let us know how you get on w this one.. best of luck.
     
  3. Moof

    Moof Senior Member

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    I think people may have held back because there are concerns about irreversible side-effects, and it hasn't yet been proven to have benefits in ME (other than the anecdotal reports). I hope you do have a good experience with it – let us know? I've been wondering how @Ema is getting on, though it might be too early to know yet.
     
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  4. keepontruckin

    keepontruckin

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    I think it is a month for Ema around the 6th of December
    I look forward to hearing your feedback, Martin.
     
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  5. MartinDH

    MartinDH Senior Member

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    Ema has stopped it after three weeks because she was getting more fatigued
     
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  6. MartinDH

    MartinDH Senior Member

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    What makes Copaxone more dangerous than other drugs we experiment with?
    I take it because I’m desperate... would really be helpful to get any news - good or bad - from @Ben H ... sorry to bother you so much man :-( but if it didn’t work with the cells and that’s why Whitney doesn’t get it, I would not risk it myself
     
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  7. Moof

    Moof Senior Member

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    I wasn't meaning to be critical at all, just wondering aloud about the reasons others might not have tried it. I think perhaps we have a slightly more hesitant attitude in the UK anyway, because we don't have access to any ME drugs other than pain relief, antidepressants, and symptom relief. The policy doesn't always make sense – GPs refuse what they see as 'speculative' treatment, but prescribe antidepressants, gabapentin and pregabalin off-label, even though their use might be entirely speculative! I guess their caution can feed into our mindset a bit, though.

    I can also see the rationale for desperate patients, who need to get back enough function to work or just to care for themselves. I've had ME since 1976, so I'm pretty used to it; I've received disability benefits the last three years, too, so I can still eat and pay my bills even though I can no longer work.

    I really do hope Copaxone works for you – let us know how you get on.
     
  8. mattie

    mattie Senior Member

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    Good Luck @MartinDH ! Please keep us updated!
     
  9. jaybee00

    jaybee00 Senior Member

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    Good luck.. Copaxone is widely viewed as the safest of all of the MS drugs. If you have an allergic reaction, you can simply stop taking it. Hopefully you will be able to stick with it for a while...I think @Ben H is not responding because Ron Davis is not ready to offer any advice on Copaxone yet.
     
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  10. dreampop

    dreampop Senior Member

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    I have heard also that it's pretty safe w/ the caveat of a rare but serious allergic reaction. Obviously talk to a doctor first.

    Rachel said it ook 3-6 weeks to notice improvement for her, although it's known to take up to 6 months if you google "how long does copaxone take to work?" and check the MS forums. Although if it works, it might work completely differently.
     
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  11. jesse's mom

    jesse's mom Senior Member

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  12. Ben H

    Ben H OMF Correspondent

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    Hi Martin,

    Just sent you a message.

    I have no idea whether Copaxone has been tested, I will try and find out.

    But we are in the situation of in vitro vs in Vivo, so what may work on the nanoneedle may not work at all in the human body. This is common as many of you know. I also have no idea if Copaxone has been tested. I know Suramin had and it attenuated the impedance signal.

    This is still extremely preliminary, and Prof. Davis is not a physician and will not be able to offer any advice on this.

    But I'll try and find out. I understand as much as anyone the desperation. The reason I've been slow to get back on this-and I apologise-is because I am severe myself. Without my phone I'd be unable to communicate online. Just fwiw, it's not me ignoring.


    B
     
    Last edited: Dec 4, 2018
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  13. Kenshin

    Kenshin Senior Member

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    Yeah, hope it works for you @MartinDH
     
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