Thanks Carole, I’ve been copied in to the letter from my neurologist to my GP. It basically says what we knew that I meet the McDonald criteria for CIS and not enough evidence around the 1999 episode to use it. She goes on to say that I’m eligible for first line treatment with injectable interferons so can’t see that I’ll get tecfidera though I’m going to ask for it if it’s first line.
Any advice on whether to delay the injectables until after our holiday? How do you transport them if they need to be kept in the fridge? Do they have to be at the same time each day?
Whats the best interferon to opt for?
Sorry for the many questions but you’re a godsend at the moment.
I thought I remembered not keeping it refrigerated. And I did. Copaxone can be kept for up to one month out of the fridge. So I took this information to heart and as a matter of course, just took a weeks worth out of the fridge and kept it in the bathroom where I could inject it daily after a shower. So keeping it cold when travelling wasn’t a problem so long as I wasn’t going anywhere too hot. (I took it for 5 years until it became clear that it wasn’t working any more!)
In my head there’s really no way that you should be eligible for Copaxone/beta interferon but not Tecfidera. And the rough estimates are that Copaxone/beta interferon reduce relapses by about a third while Tecfidera reduces relapses by 50-55%. So given the choice, I’d opt for Tecfidera. But if you can’t get it, then you can’t (& hopefully CIS means exactly that so it’s not such a big problem!) and my preference would be for Copaxone over the beta interferons because apart from injection site reactions, the side effects are much less. And I never had any ISRs. And I was skinny when I was taking Copaxone. I also had no side effects at all.
So supposing you were to have no further MS type relapses, then actually Copaxone is a better bet than Tecfidera. But if you actually have MS rather than CIS, then Tecfidera is better. Ultimately what do you feel? Have you had more than one occurance of an MS type ‘relapse’? If so, then argue all the way that you should be given 'tec. But if it really is just once, then go with Copaxone.
Thanks Sue, my neurologist refers to my 1999 episode so that could have been my initial symptoms but there isn’t enough evidence to include it for diagnostic purposes. That’s why I’m currently CIS and not MS. I’m guessing that’s why I probably won’t be eligible for tecfidera. I will ask the MS nurse about it though. Thing is my symptoms aren’t too bad at mo so guess don’t want any major side effects but do want best chance of no further relapses/changes on MRI.
My Nurologist said as I’ve had to new symptoms in a two year period i.e. What I have already mentioned plus an episode of being off balance for about 10 days in 2014 and optic Nuritus in 2015 lasting a couple of days I qualified for DMD and was given a choice of four two were interferons ( injectables) and Aumbago and Tecfidera I chose Tec as the relapses if I have any should be milder and shorter and slowed progression by about 50%. Pml risks are do not apply unless you are jvc positive which would be detected in your routine blood tests. I think I’ve got that right.
I only wish I was offered it as soon as I had my first symptom nearly six years ago and maybe then I wouldn’t have been left with this slightly off balance feeling. This disease needs attacking with everything available and as soon as possible to slow it down and as new meds are being trialed eventually stopped.
So Smurf69 insist on Tecfidera as it has a better outcome.
Thanks smokey, I’m planning on asking the MS nurse to consider possibility that my 1999 symptoms could be related and therefore eligible for tecfidera. Thank you for letting me know how you managed to get it with a CIS diagnosis. How come they haven’t diagnosed you as MS with 2 episodes?