hi all, went to see neuro yesterday as found more lesions it has been comfirmed i have ms but only thing is now they want me to start on dmds they gave me a booklet on them with the choice of 4, avonex , extavia , rebif , copaxone, i have had a read at the booklet and all seem quit bad with side effectsbexp the flu like one , the neuro says the one they commenly use is extavia but wondered what all your thoughts were on these, ms nurse is going to phone me next week to see what i think pls help , lucy xx
Hi Lucy - have you had a look on the ms decsions website? It contains information on each DMD and also a quick questionnaire (anonymous) to help you whittle down the options. To my knowledge the DMDs are pretty much the same, they’re all designed to help reduce the severity and frequency of relapses as opposed to making you ‘feel better’ like medications can. The frequency of how often the DMDs are taken do vary though. Avonex for example is a weekly injection but into the muscle rather than subsutaneously like the others. It’s best to take your lifestyle into consideration too, although injecting becomes part of your routine you also want as leasrt disruption as possible. The other thing to mention is that although DMDs carry side effects (like any drug) they won’t necessarily affect you in the worst way possible. Taking a couple of paracentamol prior to taking one of the interferons (betaferon, rebif, extavia) can help stave off the effects of potential flu like symptoms, as can injecting just before going to bed - to sleep through the worst of it. It’s very much a personal choice but do make sure you’re well informed before making your decision. Hope that helps Debbie xx p.s. apologies for one big paragraph, it’s all I can do!
Sorry about the diagnosis, but I’m impressed with how proactive your neuro is; some of them aren’t so quick to suggest DMDs.
As Debbie said, the msdecisions website is a really good source of info so it’s a good place to start. What you choose is entirely down to which one you think will suit you best; we’re all different and what suits one person may not suit another so there is no “right” choice.
There is info from research that isn’t on the msdecisions website, but this can just add to the confusion so if you don’t want more info, don’t read the rest of this paragraph! Rebif44 did really well in a recent clinical trial against Campath, showing about a 45%(?) reduction in relapses and making it the best at preventing relapses. However, there are some data suggesting that Rebif22 is better at slowing brain atrophy than Rebif44 (which is related to progression). [Rebif comes in two strengths: 22mcg and 44mcg.] Avonex is the best at slowing progression and brain atrophy, but the slowest to get to full capacity (it has only a weak effect on relapse rate in the first year overall; I think 18%, but I might be wrong). There is no evidence that Copaxone slows progression or cognitive decline, but it gets to work fast and there are no flu side effects (making it a very popular choice).
Btw, Extavia is a generic version of Betaferon. I believe that it is very much cheaper although I assume that it is just as effective.
I recommend that you do the rating exercise on the msdecisions site and see what comes up looking the best for you. The 30% figure that is quoted is an average: some people do very much better, some do very much worse, everyone else is somewhere in between - only giving something a go will allow you to find out which one is the right one for you, and it may not be the one that suits others. And if your first choice turns out not to suit you, then you can just switch to something else. So although it seems like a huge decision, it’s not so bad really
Just to add that I have now injected 3 times on Avonex and was really worried about the side effects before I started them but liked the idea it was only once a week. I have had very few side effects. Perhaps the odd hot flush and feeling achey but it is manageable with paracetamol. I used the msdecisions website thanks to rizzo recommending it to me and ordered the DMD leaflets from MSS and MS Trust.
hi all thank you for your replys , im reaching towards the avonex as work mon fri and this only gets done once a week so if i do it fri night might be better option, i know this is into the mustle but im sure i could get used to that, really dont want to be having to much side effects through the week while working lucy xxxx
Hi Lucy, I am lucky that I work from home on a Tuesday and therefore have opted to do my injection on a Monday night so that I don’t have to worry about travelling when I am feeling a bit ropey. I think I developed symptoms after the first one just because I read that you might get them but honestly it hasn’t been that bad. The nurse told me that the side effects ease after 12 weeks. The whole process is easy with deliveries too, I have had a 3 month supply delivered, (we purchased a lockable fridge from e-buyer which was under £100 so that my toddler could not get hold of them), and the sharps bin with a cool bag. On next delivery, Bupa Home Healthcare pick up the sharps bin and deliver the next 3 months worth, they also text me the evening beforehand to advise roughly the time they will be there and what the name of the delivery driver is. I have asked my neighbours to take delivery for me on the next one as I’ll be at work but you can arrange for it to be delivered elsewhere. Ruth x