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Advice please?

Hello lovely people,

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?

Very many thanks in advance,

M

hi mossy

i started off with copaxone which was fine but i wasn’t rotating the sites properly and ended up with lipotrophy.

(a gap on my upper arm where a bit of fat has gone).

my ms nurse saw it and said that i mustn’t inject any more.

i’m now on tecfidera.

the PML risk means that i have 3 monthly blood tests checking my lymphocytes.

i feel safe on tecfidera.

carole x

Hello Mossy

With regard to Tecfidera, have a look at this post from the Everyday Living pages: https://community.mssociety.org.uk/forums/everyday-living/tecfidera-fears Your questioning the dangers of PML are very similar.

​Sue

Thanks Carol, good to know Tecfidera feels safe for you, and that there are frequent blood tests once you’re on it.

I’m not a fan of injecting, and was a bit worried about the sort of issue you had with copaxone. Nice to know I wasn’t just being weirdly paranoid.

Mx

Cheers Sue, hadn’t seen that! Seems like a common worry with Tecfidera; I hadn’t realised just how tiny the chance of getting it was though.

Mx

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.

Best of luck with your decision.

Sue

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