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Newly diagnosed - Copaxone or not?

I have recently been diagnosed with RRMS. In April 2018 I developed facial numbness which resolved itself after a few weeks. No other symptoms.

It has been suggested by my consultant to go on Copaxone (injections 3 times per week), but I’m in two minds whether to take it or wait and see if and when I have a further relapse.

I know that the potential risk of a further relapse is variable and unpredictable, but with my first experience being so mild, I am hopeful and feeling optimistic that I may never have a further relapse. Am I being naive, or perhaps a little stubborn?

Apart from injection-site problems, what other side-effects has anyone suffered whilst using Copaxone?

Any advice welcome and appreciated

Hi. I’m not on Copaxone but have been using Betaferon for about the last 15 years and it’s the same principle. They are to reduce the frequency and severity of any future relapses. Each relapse leaves a small amount of damage so if you can slow them down… less damage so more chance of staying well for longer.

You are quite right to think you may never have another relapse but in reality, you have MS and it doesn’t go away so do you really honestly think that’s likely? Your MS has been active so chances are it will be again. If you wait for the next relapse, it might be too late so why wait? Relapses are what you are trying to avoid!

There are many more DMDs to choose from now than when I had the choice so we are much luckier now. Forget the side effects, the next relapse could have you off your feet and very unwell for months and believe me, that’s far worse than (with Betaferon in my case) mild flu symptoms which paracetamol took care of anyway. And side effects don’t last long.

It sounds harsh but DMDs are not the enemy, MS is and you need to throw everything at it to try and keep it at bay for as long as possible. A DMD, a good balanced diet, exercise and also don’t underestimate the importance of rest. That’s not being lazy, it’s giving your body a chance to regroup.

Good luck with whatever you decide.

Hello

I’m with Val on the subject of DMDs. They are a kind of insurance policy against relapses. You only need one devastating relapse to make you realise their importance. But sometimes that relapse causes damage that’s hard to overcome.

I’ve been unlucky with DMDs and for most of my 22 years with MS have had no luck with them. My stupid body throws hissy fits when given drugs that it doesn’t like so I’ve had to come off them all. And in that time I’ve had some fairly serious relapses which have left me quite disabled.

I’ve just recently started taking Copaxone (again, I stopped taking it years ago as it seemed to stop working, in retrospect I wish I’d just stuck with it!) When I took it before, I didn’t have any side effects whatsoever. I didn’t even get any injection site reactions, which I am getting now.

Apparently the 3 times a week version of Copaxone is better than the old daily type. It starts working quite quickly and possibly works better too.

It’s an easy injection to do, a tiny needle just slips under the skin and doesn’t hurt. The ISRs (if you get them) should dissipate after a while, so sooner or later, you’ll have no side effects at all and with luck, no relapses, or milder relapses.

But, it is your decision to make. Just because some stranger on here says take X drug, or Y, it is your choice as to whether to start a drug now or wait to see what happens.

Best of luck with that decision.

Sue