graham100 01/10/14
Last reply 3 years ago

Been to see nurologist today, she wasn’t happy that iv stopped all drugs? Ok took me off rebif, wants me to inject copaxone, until they can get me on a tablet, forgot what it was. Think it begins with T?? Suppose I best try, she was quit insistent, does appear genuinely bothered? Any advice??

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3 years ago

@graham100 , Tecfidera is probably the oral option referred to.

The situation with DMDs is that they’re a bit of a gamble on your future. But, with this gamble, you’re never sure whether you’ve won. They’re purpose is to cut down the number and severity of relapses.

So, if they cut down your number of relapses and reduce their severity , then you’ve won. Well, I think that’s the way it works. 😕

But, seriously, it allows you to be proactive in your management of your MS. You’re actively doing something, which has Trial statistics behind it which says it should work.

That is, until the day they decide to call your MS Secondary Progressive. Then you get dumped on life’s scrapheap with no DMDs, like me! 😉

3 years ago

I’m not really surprised she wasn’t happy – it’s generally accepted that untreated MS gets worse…. but as @stumbler says, getting the right drug is a hit and miss affair. I’ve been on Copaxone for ten years and it’s worked very well. Just one or two very minor relapses. Now, it’s looking as though I’ve got breakthrough disease so I’ve been offered a second-line therapy. As I read it, that’s what you’re being offered too, so I imagine the thinking is that first-line (i.e. the injectables) aren’t strong enough in your case to make a difference to the MS. When I was dxd, there was no such choice, but now, we have first + second + third-line drugs. Look at it this way: you want to keep your MS in the relapsing-remitting stage for as long as possible because once it’s progressive, there are virtually no treatment options. The longer you can keep your body free from relapses (i.e. from permanent damage) the better the odds for the long term. With any luck, by the time you enter the progressive phase there WILL be drugs, but in the meantime don’t worsen the odds. The drugs are the best insurance policy we have. I’m glad you have a consultant who’s on the button. That is definitely a plus.

3 years ago

Hi stumbler,, yes I’m aware of your predicament and can sort of see where they are coming from, while wasting money on drugs for people that are going to get no benefit, they could be spending more on ME. Lol, even though they have no idea if it will help anyone?? The thing in Japan that they recon rebuilds the nerve damage as apposed to preventing more damage has to be the one for you as well as me?? Wish they would hurry up, be to old to bother soon. Lol.

3 years ago

@graham100 , I’ve given up expecting to see anything in my lifetime. By the time a solution was made available, I think my body would have started to pack up! I know, I wouldn’t be in a position to enjoy any new found life! 😆

But, I’m hopeful for future generations….

3 years ago

Hi Graham 100, I’ve been on Rebiff and later Copaxone too.
I was doing good, untill Colitis Ulcerosa came also in my life.
I had to stop with Copaxone because of the medical treatment for my CU. Had no choice, otherwise i wasn’t stopped.
I had no trouble with Capaxone and years felt good with just 1 small relapse.
Know i am since 2 years SP and there is no medical treatment so far.
I would say, go for it !


3 years ago

Hey @stumbler do not ever give up! They are working on stuff all the time and I am sure there is some thing in all of our weird auto immune diseases that they will work out and a treatment will be found – what ever artificial stages we may be at. Never, say never!!! Stay positive – we need you and you need you!

3 years ago

@tabbycat , thanks for your concern. I’m philosophical about where we are and where we’re going with MS research.

I’m still sitting here smiling – ask any that know me! 😀

3 years ago

Yes, your right, life’s a bitch, then you marry one,, what chance have you got. Lol. Seriously though that Japan thing sounded good and gives you hope, even if only for a couple of days till someone tells you the report was rubbish. We all know its not rubbish, just that the phamasutical giants paid them off again??? My theory anyway.

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