kerriejayne 04/07/12
Last reply 5 years ago
copaxone

am confused copaxone is apparently not working for me ?? anyone know what they will put me on instead ??

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chueykooh
5 years ago

If Copaxone isn’t working for you and it’s the first drug you tried, they usually will try one of the interferon drugs like Rebif or Avonex.


Becks
5 years ago

i went from rebif (2 weeks – allergic) to copaxone (2.5 years – allergic), to avonex (7.5 years) before ms became aggressive and non-responsive to avonex and am now on 6 months of tysabri – currently in the appeals process for longer term funding as have had positive results so far….watch this space x


kerriejayne
5 years ago

they have mentioned tysabri to me but very cautious about it as two main side affects is severe brain damage or death i have been giving the option of it but is the risk worth it ? x


Becks
5 years ago

i was out of options as it was tysabri or mitotroxine which i didn’t want…i feel tysabri is worth the risk but its easier to say that as i am JC virus negative – have you had the test to see if you are positive or negative as this is the first step to take in deciding your options regarding TY. Personally the results i have had after 5 infusions its a definite YES its worth it and want to stay on it as long as i can – i was getting sick every 4 months and on methylpred steroids every 6 months and currently i’ve done 6 months 2 weeks from my last relapse and can walk v short distances and indoors unaided (in january i could only do 10 steps on crutches before collapsing in a heap, my cognition has recovered to a level of around 8 years ago and i have a great quality of life now which i didn’t have before.

its a very personal choice but the first step is the blood test as the decision is sssoooooo much easier to make if you are negative!!!!!!!!!!!!!!!!!!


kerriejayne
5 years ago

Yeah I have had the JC blood test did come back negitive but they wanting to give me more test for something else no idea doctors don’t really tell u anything these days 🙁


ome73
5 years ago

Hi Kerriejayne,

I too have just been told Copaxone (after 15 months) is not doing what it should be for me and I have been given the choice of Tysabri or Gilenya – I am JC- but so unsure on what to do.

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