My experience of different MS treatments
Love at first sight is not how I would describe my relationships with MS disease modifying therapies (DMTs) over the years. But I’m pleased to say I think I’ve now found ‘the one’.
As my MS nurse said to me once, after I turned up for my appointment with more unbearable side effects: "it’s like meeting the right person, there’s one out there that’s right for you, you just haven’t met them yet"! And she was right. It took a long time and some ‘bad dates’ but I’ve finally found them.
My experience of Copaxone and then Tecfidera
When I was first diagnosed, I was offered one of the moderately effective treatments. I chose Copaxone (glatiramer acetate). We had a short-lived affair as my skin wasn’t a fan and I would get really hot flushes. To be honest, this put me off for a while as I thought all injections would be the same.
Then I was offered Tecfidera (dimethyl fumarate) and I gave it a go as it was a tablet. My goodness. I won’t go in to too many details but I think I have a sensitive stomach when it comes to that one!
Giving Plegridy a go
It took me a while to go back on treatment after those two but thinking it might be third time lucky, I tried one of the beta interferons, Plegridy. This was my favourite, as I was injecting less often so the skin site reactions were OK (or so I thought). The problem was they didn’t disappear, even when changing where I injected into. After 6 injections I ran out of places to inject so had to come off it.
It’s personal how you get on with your MS treatment
I chose to take a break from taking anything while I had my son. But after a few years I felt I had to give it one last go. I’m so pleased I did.
I’ve always been really lucky to be given a lot of information about the options available to me (first line treatments only). I’ve read factsheets and used an online decision maker tool for comparisons (from the MS Trust). When I’m trying to decide, I ask other people what treatment they’re on too, to get a real life perspective. But as you can see from my experience, it’s entirely personal as to how you get on with them!
I’ve been on Avonex for just over two years now
It’s the best thing I did. I had thought that when I had no symptoms my MS was all under control. I didn’t realise that things could be going on in the background getting worse without me knowing it. So when I wasn’t on treatment I worried that I wasn’t doing enough. I thought I would try one last time - and fourth time lucky it seems. Avonex (another beta interferon) has taken that fear away.
Dealing with side effects
It’s positive that (touch wood) I’ve not had any major relapses in the last two years. But there are some downsides. For me they are the flu-like side effects that come with it.
They’re more than bearable, but to be honest I’ve started to dread them once a week. I used to inject it on a weekend and have gradually changed it to a Monday evening so I can sleep through most of the side effects. I also drink lots of water and take pain killers which help. I’m also finding it harder to push the button on the auto-inject but with a bit of deep breathing I can overcome that.
I think I’ll stay on Avonex for the foreseeable, Unless something changes, I’m not eligible for anything else that’s much different to what I’ve already tried.
Considering treatment options
I’d say whatever treatment you’re considering, if you don’t get on with the first one, keep trying other treatment options. And remember MS nurse Carolyn’s wise words, "there is one out there that’s right for you!".
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