Following on from my CIS thread on the Newly Diagnosed forum, I’m trying to narrow down my DMT choice before my MS nurse appointment on Monday. I’ve narrowed it down to these 3.
I’m thinking about it like this
Rebif pros 3 x weekly rather than daily, most effective
cons flu symptoms and site reactions
Avonex pros 1 x weekly
cons bigger needle worse flu symptoms
Copaxone pros no flu symptoms
cons site reactions, daily though have read about 3 x weekly
Can anyone think of anything I’ve not?
Tecfidera
I took Copaxone for 5 years. No injection site reactions. I stopped using my upper arms cos they didn’t really have enough fat on them (wish I had that problem now 
but injecting daily into the more fat covered areas (bum, thighs, stomach sometimes) it was fine.
I agree with Paolo, as far as I’m concerned if you qualify for some DMDs you should get the option of them all, and therefore Tecfidera is the best option, but I know this discussion has already gone over on the newly diagnosed forum.
So my vote would be for Copaxone. I have had Avonex but had bad cognitive side effects, unusually. And I’d underestimated just how hard it is to make yourself stick a bloody great needle into your own leg muscle. But obviously now there’s the autoject option so it’s probably less unnerving. (Because you don’t actually see the needle with an autoject.). By the way, I suspect that people who use autoject devices with Copaxone get the worst ISRs. My reasoning is that the needle force is much greater than if you gently slide the needle in. Which is what I did.
Sue
Tec isnt licenced for CIS
Thanks Paolo, I’ve asked about tec but as Teal says it’s not licensed for CIS. My plan is to ask for that as and when MS is diagnosed.
Thanks Sue, it’s good to hear that you had no adverse reaction to Copaxone. Am I right in thinking that it’s best to inject manually? I’ve got quite sensitive skin eczema/psoriasis type and am allergic to quite a number of things. What’s the thinking about the 3 x weekly Copaxone v daily? Are the flu side effects worse on avonex as it’s a bigger dose once a week?
I injected manually and I think that’s the reason I had no ISRs. I’ve got eczema/ sensitive skin etc too so I think it might be OK. Don’t know about the 3x weekly thing as it hadn’t been invented then.
Sue
I was on Avonex for 10 years and found it easy to tolerate. Truly, the size of the needle and depth of the injection is detail, set against the biggie of having to stick a needle in yourself - on purpose! - at all. Only once a week and no blessed site reactions!
The Avonex hangover was nothing a couple of ibuprofen before bed and another couple in the morning wouldn’t deal with (as in ‘largely prevent’ - although it was certainly important to remember to take them). It is kind of like the medicinal equivalent of having had half a glass of red too many the night before, although that is not an analogy that the doctors would necessarily approve of. Nothing to trouble the scorers, anyway.
Alison
Thanks both. It’s not a biggy but what about alcohol? Are you allowed the odd glass of wine?
I’ve been using 3 times weekly Copaxone for about 8 months now. It’s really a LOT easier to administer yourself than you think it’s going to be. Slight stingy sensation for about 10-15 minute after each injection but that’s about it really. I’ve used it with and without the autoinject and as Sue says - without the autoinject it definitely doesn’t seem to hurt as much. I only really use that now on my hips/bum cos it’s easier than without. It has a bit of nuisance value sometimes but if it keeps the relapses at bay, so be it! 
Good luck with it and I definitely enjoy the odd bit of alcohol.
Thanks NanaJuls, it’s great to hear some first hand experience. Do you mind me asking why you chose Copaxone over the others? Did you opt for 3 x weekly or was it all that was offered?
My neurologist went through my options with me. The other two potentials both came with side effects and as I am - very luckily - not too badly affected with the MS at the moment, I decided to go with the Copaxone - I was only offered the 3 times weekly option. If - heaven forbid - I ever have a relapse then i’ll have to have a rethink - but if it ain’t broke, don’t fix it.
Juls
Juls, was it rebif and avonex you were offered too? I’m not that bad either to be honest and I’d like to keep it this way for as long as possible. I’m put off by the flu side effects of rebif and avonex but read that rebif was most effective at delaying conversion of CIS to MS.
So sorry but I can’t remember what the other options were…twas a long time ago - and i have enough trouble remembering what I did yesterday heheeheh
Juls
Sorry to be so nosey. Just finding it hard to choose. Wish they just said we suggest option a and leave it at that.
well it should be
and you have my most profound sympathies that it is not
The drug now known as Tecfidera used to be prescribed as Fumaderm for the treatment of psoriasis!
I’ve been trying to work out why not, Paolo, and I think it can only be the risk profile. Does the NHS want the risk of people with no specific diagnosis having complications from what may be unnecessary treatment? DMTs are really fairly new and no one knows what the long term risks are.
I think most neuros see a case of CIS and just tell you to wait and see. Those who are giving the option of a DMT are the least conservative, but they are constrained to only offer some of the First Line.
They may have a point, of course. Someone with Sjogren’s could present with a CNS lesion or two and positive LP, all of which could add up to a CIS and what the effect of wrongly treating that with various DMTs would be, I don’t know.
If anyone had the energy, maybe they could try to find out. It might be something to suggest over on Shift.ms for one of their interviews.
Please correct me if I have anything wrong here, my only qualification is the ability to Google
I’m about to be moved from copaxone daily to copaxone 3 x weekly. I was told when I was diagnosed that copaxone was the best option for me as the other injectables could play havoc with my depression and anxiety. And it has been totally fine, no side effects. Good luck with whatever you choose x
Yes, but that doesn’t mean that it didn’t have risks - it was prescribed for severe psoriasis, which is pretty disabling I believe.
Don’t get me wrong, I still want to have it, but I’d just like to understand why the NHS doesn’t recommend it as first line for everyone. I find it weird that they do this ‘you have to make the decision’ thing and why neuros are still suggesting beta-interferons.
Wish there was an edit button. That last sentence is an abomination.