Just like the election of a pope, or the announcement of the winner in some Saturday prime time family entertainment bollocks, I expect you’re all on tenterhooks wondering which disease modifying medication I’m going to plump for.
I don’t know 100%, but here’s my quick notes so far (apologies for superficiality):
Beta Interferon (Rebif, Avonex, Betaferon, etc)
– It’s a no for this as I’ve just given it up after six years. It made me extremely depressed – see Beta Interferon Blues.
Glatiramer Acetate (Copaxone)
– a big possibility. The only things against it are the injection site reactions and the daily injections.
– no greater relapse reduction than copaxone, I think, but with a few extra side effects such as hair loss, gastric nastiness etc
– a risk of some heart problems, including arhythmia and in extreme cases cardiac arrest. Also a risk of macular oedema in the eyes. It’s a no to this as I’d rather eliminate the risk completely.
– It’s a no to this as it can make you vulnerable to infection. I am married to a teacher and I have two primary school age children. I also spend a lot of time with my hands in the earth on my allotment. I’m exposed to a lot of infections. Also there could be blood clotting and thyroid issues. Once you have the infusion, there’s no going back – it’s not like you can stop taking it.
– The brain disease PML is documented among Tysabri users, but thankfully extremely rare. I think I would only be eligible for this if I had extremely active MS anyway. I don’t fancy having infusions every four weeks – they’re not something I can do quickly and easily in the comfort of my own home.
Dimethyl Fumarate (Tecfidera)
– this is my number one choice. In trials it has reduced relapse rates by something like 45-50% and is delivered twice daily in tablet form. There are gastric side effects – nausea, diarhoea etc, but I’ve done my homework and there are coping strategies and the nastiness should wear off over time. Worth a try, I thought. There’s one little drawback: it hasn’t been approved by NICE yet, so isn’t available to NHS patients at the moment. A decision is due in August according to the NICE website.
So there you go… I have more reading to do, but at the moment, it’s Dimethyl Fumarate first, and if that doesn’t work out Glatiramer Acetate is the fall-back.
I had a wobbly moment while talking to my better half last night (lost my balance slightly as I turned round). I think she’s worried that I’m not on any meds at the moment, but I think I would’ve done that anyway. I guess whatever medication I choose doesn’t guarantee a long term improvement in conditions.
2 thoughts on “Back to square one”
Copaxone/Glatiramer Acetate has a new injection option of three times per week instead of every day. http://climbingdownhill.wordpress.com/2014/06/04/copaxone-update/
Hi! The three doses per week option sounds interesting, but it hasn’t filtered over to the UK yet. We have a body called NICE (National Institute for Clinical Excellence) that have to pass any new treatments for cost effectiveness etc before they are available on our health service. So I guess the three dose form will have to go through them first.
It puts a slightly different perspective on things, though and it definitely counts in Copaxone’s favour, knowing that the new dose might appear on the horizon at some point (I think it has only just had approval in the USA). Thanks for the info!