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Lemtrada,Tecfidera,Tysabri

For m.s. do these drugs provide a cure or a treatment or neither?

Why does there seem to be no uniformity between what different neurologists may prescribe?

Are there any side-effects to taking these potent drugs over a long period of time?

Different neurologists have different opinions obviously. What is yours, as I’m sure you have one?

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the drugs are not a cure, so far there isn’t a cure.

what the drugs do is reduce the rate and frequency of relapses and the ensuing disability.

it is a matter of individual choice whether you choose to take a DMD or not.

i chose to have them.

yes they have side effects but i refuse to lie down and let ms beat me up again.

over long periods of time - copaxone daily injections left me with severe lipotrophy and therefore i switched to tecfidera.

​i really have no idea what the long term effects are but the information must be out there because it has been licensed for use in the USA for a few years.

are you considering trying one?

carole x

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Cure or treatment?

Treatment. So far, only disreputable people claim to have a cure for MS. Maybe one will come along soon and maybe it won’t. Too late for most of us, at any rate.

Uniformity of prescribing?

When there are variations, people complain about ‘post code lottery’. When there is uniformity, people complain about a centrally-imposed one-size-fits-all policy that does not respond to local needs. Take your pick.

Long-term side effects?

As Chairman Mao is said to have replied when asked whether he thought that the French Revolution had been a success: ‘It is too early to tell.’

Are you on one of them, by the way?

Alison

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Pigpen/Carole, i like your thinking, i too am not happy to sit back or ‘lie down’ There is to much i want to do!!! I’m starting Lemtrada, and hopefully i’ll keep from anymore damage til a cure is found… which i believe will happen. I hate to lose, so ms is really gonna have a fight xx

Cure? No. And i think we all know that.

Treatment? Well of course. But an effective treatment? Only time will tell and even then, it is just like the disease itself, entirely subjective.

But it was impressed upon me, from the very start, by every single ‘authority’ in the field of dealing with this thing called MS, that a positive mental attitude is absolutely integral to living with it ‘successfully’.

I am on Tecfidera. Its efficacy is stated as a percentage somewhat less than 100%. Might i be one of the lucky ones with a reduced rate of relapse? Might my relapse rate have been exactly the same had i not started tecfidera? Is this just an elaborate ruse to extract shed loads of cash from health authorities and patients? Is it just a placebo? I cannot tell you.

Do i feel empowered by taking it? You bet i do.

Am I going to ignore all strains of advice due to some cynical scepticism? I might if proven to be reasonable.

Do i suffer any negative side effects to the DMD products and indeed my LMB decisions (lifestyle modifying behaviours)? perhaps. But at the end of the day, if tecfidera is hokum and i am destined to be in a wheel chair, i can catch up on all the cheese i wish i could be eating then!

The disease, the drugs, the specialists, the symptoms, the prognosis, the balance of hope… none have uniformity. If such is highly desired, then i feel bad for you my friend.

Thanks for the replies.

No, I am not on any DMD’s. The reason for this is that a friend who also has m.s. and is on a DMD was recently dx’d with cancer. This cancer was an exceptionally rare cancer and the oncologists advice was for him to come off the DMD immediately. Advice from friends neurologist concurred with the oncologists advice. My friend told that he was ‘unsuitable for DMD therapy’

Of course there is a possibility that he would have developed cancer even if he was not on a DMD.

I am by nature cautious when it comes to taking any drugs and until empirical evidence, not anecdotal evidence is available to show the efficacy of a certain drug I will not be wanting it.

Can anyone provide any empirical evidence showing the efficacy of any of the DMD’s ‘on offer’ at the present time?

Yes there is evidence of their effectiveness. This is in the form of double-blind placebo-controlled trials, done by the drug companies. If you want to read up about what this means, you could - but I think you probably prefer to carry on thinking that there is nothing that can be done for people with MS, that the treatments being offered are both ineffective and dangerous and that there is a huge conspiracy against people with MS. I think that is simply wrong, but it is your privilege to believe it if you wish to.

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The problem with all drugs is that you don’t know whether you would be better or worse if you took the opposite choice. So take the drug, get worse it’s the drugs fault. Don’t take the drug, get worse it’s coz you didn’t take it. And vice versa if you get better.

im on tysabri, I think it’s stopping things develop, but not improving anything. Will never know if things would be worse or better without it, but I believe it’s helping and got to do something…

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