Starting Copaxone

MartinDH

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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
 
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Silencio

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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.
 

Moof

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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.
 

MartinDH

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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.
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
 

Moof

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What makes Copaxone more dangerous than other drugs we experiment with?
I take it because I’m desperate...
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.
 

jaybee00

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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.
 

dreampop

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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.
 

Ben H

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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
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
 
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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
Hi Ben,

I hope your situation improved in the last 2 weeks.
Have you find something out?

Martin postponed the beginning of taking copaxone because he first wants to send some blood to Metabolon to test the metabolism stuff and avoid false results due to taking copaxone.

Hope we can manage that soon.

Best regards
Michael
 
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Martin haven‘t started taking copaxone yet. It takes longer than expected to proceed the Metabolon test. Due to his hospital stay in the next week we will postpone the whole Copaxone thing. I will give an update as soon as Martin starts with Copaxone.