I’d be very grateful if anyone has any words of wisdom on the following. I’ve has RRMS since I was 19, but was only diagnosed last year (a decade later) after I totally lost it with my GP and demanded an MRI. Within 6 months I had it confirmed that I had RRMS, but that I wasn’t an active enough case to have DMTs (recently found out that this was untrue and I should have been given them based on the number/location of my lesions, but oh well).
This year I had another relapse and I’ve now been offered a choice between Beta Interferons, Copaxone and Tecfidera. I’ve read loads of stuff online about them, but I think I’ve gone overboard and I’m now a bit paralysed by the decision
My automatic inclination is towards Tecfidera, because of the high success rate and lack of needles! But the PML possibility is scary, and the others seem to have milder side effects. Essentially, I’m just looking for some advice - I’ve had very little contact with my MS team, or anyone else who has MS, but would like to have an idea of the direction I want to go in terms of treatment before my appointment this Thursday.
So, if anyone can answer any of the following, I’d appreciate it!
Do you/have you taken any of the above? Did you like it/ were the side effects manageable/ are there any tips and tricks to manage them?
Do they give you a test to see if you are likely to get PML before you get treatment?
What are the injections like? Do you have to find a vein, or is it more like a pinprick jab?
Hi again Mossy (I have a bit more time today so a couple more things for you to consider),
One thing I would say about subcutaneous injections is that they are way easier than you think they’d be. They don’t exactly hurt, the needle literally slips just under the skin. You can get autoject devices for all the interferons and copaxone which means you just point the device at the bit of (preferably fattish) bit of flesh and press a button.
I used copaxone for about 5 years and never used an autoject, I think injection site reactions and bruising are more common with a machine punching the needle in. It’s more gentle to just be brave and slide the needle in. And if you use your bum (which I did mostly as it’s the fattest part of me) you don’t even look at it.
Basically, you just need to look at the pluses and the minuses for each drug. The expected relapse reduction rate versus the potential side effects.
The last thing I would say though is that apparently Tecfidera works best when it’s the first disease modifying drug you’ve used. See: Multiple Sclerosis Research: #NeuroSpeak: DMF as a second-line agent or not And if you try one drug and find that the side effects are too bad, you continue to relapse, or that maybe with Tecfidera your lymphocytes are depleted, you can move onto another drug.