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Neuro is talking of taking me off Copaxone !

Hi all

I saw my Neurologist the other day, as I am SP she said she would like to take me off Copaxone within this year. As I have been relapse free for the last few years with only gradual worsening of sensory in my hands & strength/balance in my legs & core muscles. I am scared at the thought that without Copaxone my relapses will return, has anyone any experience on this matter ?

All the best

Innel

Yes, Innel

Happened to me last year.

The way it seems to work is that if you have deteriorated (my case from EDSS1.5 to EDSS 6.5) and then been more or less stable, you are considered to be SPMS and therefore do not qualify for Copaxone (or any other 1st line DMD, I think).

For me, this was accelerated by the Healthcare at Home screwups last spring, and I stopped in mid-May.

My relapses have always been in the form of extreme fatigue. I had one bout of fatigue about a month after I stopped (mid June), and another (not very bad) after Christmas. Neuro said that fatigue on its own, with no other obvious neurological symptoms, was probably not a relapse. I started to keep a log of what happened when I stopped - but I was writing the same thing every week (like:no change) so now I only update it as-and-when. I do suggest that you do the same, so that you have a record of any changes that do occur.

If you want more, PM me.

Geoff

Hi Geoff

Thank you for your reply. I was classed as EDSS 6.5 shortly after I started taking Copaxone, I had been on Beta Interferon before that but I was having up to 20 extreme muscle spasms on all my whole left side a day, not nice & was even checked out for Epileptic fits. My funniest day ( looking back at it now ) was at a group class of physio/exercise when my spasms started within minutes of starting, so they moved me onto the treatment bed & I led there watching the class whilst having quite a few spasms with a Physio either side to stop me falling off.

I do think your idea of keeping a diary is a good idea.

Innel

I too would be worried in your situation as things don’t seem to have too bad whilst you’ve been on Copaxone -

Hi, I have been on Copaxone for nearly 10 years now with only about 3 bad relapses in that time. My neurologist feels that I am probably progressive now but does not want me to stop the copaxone. He feels I still tolerate it well and believes strongly that copaxone still offers a continued neuroprotective element. I too would be nervous if I had to stop. Think you should fight to stay on it for the time being as once you stop they won’t let you have anything else.

i’ve heard that too ginsozzled (love your name).

innel give him a battle - fight for your right to continue on copaxone!

good luck

carole x

I was only put on Copaxone once the neurotic had decreed I was Secondary Progressive.I continued my ‘normal’ slippage and after 14 months stopped the Copaxone all by my own.There was no change in the speed of progression and I’m still waiting for the £40,000 ish that I’ve saved the PCT

I believe that unless you had an identical twin with exactly the same MS symptoms,and you got the drugs and he/she didn’t you’d never know what was doing any good.Twins have always been of great interest to researchers

Wb

I have been on Copaxone for about 6 years now with no bad injection sites. Things are a little different as I live in France so I’m not sure if I could get back on it if things don’t work out. A question I must remember to ask her when I see her in 5 months.

Thank you all

Innel

Hi Innel, I live in Belgium and I know that my neuro is not keen to label me SP as the belgian health system would be inclined to stop the copaxone. I am also covered by my husbands work health insurance and they happily fund my treatment as long as it is on the recommendation of my neuro. From what I understand of the french system there are a lot of similarities. I know friends back in the UK who have have been taken off medication once they are officially SP.

Hi Ginsozzled

I was classed as SP in the UK along with my EDSS score of 6.5, when I first saw my Neuro in France I gave him a letter from the UK that detailed my disabilities. All my treatments/medication is paid for in France as MS is one of the conditions they pay for fully.