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DMD Decisions - help!

Hi, I’m looking for a bit of help making the decision of which DMD to go on, I know I am able to stop and change if I start and do not like one but would prefer picking one and just sticking with it if I can. I had my appointment with the MS nurse August 8 2017 to inform me about which DMD’s I can or should take. A few have been crossed out as I am not eligible for them at the minute so Lemtrada, Tysabri, Zinbryta and Gilenya have been ruled out. Leaving me with 8 choices, from these my nurse has also ruled out Betaferon, Extravia and Rebif. I now have 5 choices to pick from (Avonex, Pledridy, Copaxone, Aubagio or Tecfidera).

I am a 20 year old female and have been a vegetarian for the past 8 years meaning Tecfidera (containing beef gelatin) would be one of the last resorts if possible. As well as this, I absolutely HATE injections/blood tests which really limits my options. Given the choice (if I really really have to) I would rather have a regular injection over a blood test but would still be worried about doing/having the regular injections.

So one of the simple options would be to go for Aubagio as this is a tablet rather than injections, meaning although I would still be having 2 weekly and 2 monthly blood tests, I wouldn’t be giving myself an injection every few days or so BUT the side effect that is really putting me off Aubagio is the hair thinning/loss as I would be devastated if my hair were to fall out.

Copaxone is looking like a good choice due to no blood tests being required but that means I would be injecting myself everyday which I’m not sure that I would be able to do? I’m not too concerned about the side effects as I think I could cope with feeling sick and headaches but if I’m taking Copaxone everyday does that mean I will just have a constant headache and constant feeling sick all day/everyday, as that seems stupid to put myself through while the MS is not actually creating any unmanageable side effects at the minute so I would be making myself more sick and uncomfortable short term

This leaves Avonex and Pledridy which both need 3 monthly blood tests for the first year then 6 monthly after that. Out of the two I would slightly favour Pledridy only due to the fact it only has to be injected once a fortnight (hopefully reducing the amount of time I am affected by side effects) instead of once a week with Avonex.

If anybody has managed to get this far and is still reading, (thank you) can you give any advice on which DMD you would go for in my position or any advice on which drug you are currently on/have been on and how the side effects have affected you?

Thanks so much - S x

Hi there

I can’t really help much as I’m not yet at that stage, but I just wanted to comment on the Tecfidera thing. I’ve been veggie for 28 years and I’m pretty strict. That said, from the small amount of research that I have done on DMDs and what might be available to me, I think I’d have to make myself get over it

Why do they have to be beef gelatin? Are there really not other ways?

Good luck with your decision.

x

Hi S

I was on Plegridy for 18 months and found the pen so easy to use, it’s really not like a blood test or injection.

You get a pen (it’s an Epi pen i suppose), choose a body part with a good covering of fat (that was easy in my case!) e.g. thighs, tummy etc. and place the pen and push down. Count to 5, remove the pen. It barely breaks the skin. You never see the needle.

On my thighs I got a slight stinging feeling for a few seconds, but on my tummy I didn’t really feel anything. Rarely got a spot of blood after removing the pen. It really is that simple so don’t be scared - I think it’s easy to tense up and expect it to be awful but it isn’t.

My only side effect was injection site reactions each time, appearing a few days later. A pink circle about 3-4 inches across. Itchy but not unbearable. These took about two months to fade, just ready for the next time using the same area. You use a different site each fortnight and rotate.

I never felt unwell or had the flu-like symptoms. I never needed to take a Paracetamol before the injection nor did it just before bedtime as many patients will be advised to do.

Also I never had three monthly blood tests, just my normal six monthly appointments with my MS nurse where she took blood anyway. Never heard of needing three monthly tests, maybe things have changed?

I had to change to Lemtrada this year as my MS was still very active, so I guess it didn’t really work for me, but who knows how much worse things may have been without it.

Talk it over with your MS nurse, I was invited to a group discussion session where they went through all the options and showed me the pens (dummies) and how to use them and answered all my questions. Ask if your team do something similar. But I would urge you to try, don’t let your fear of DMD’s lead to a worsening of your MS.

Good luck with your decision

AngC

Thanks for the response.

Wow, 28 years is such a long time. It’s such a tough decision to have to pick out of the DMD’s available, and although difficult, I don’t want to rule out any option purely based on one ingredient or side effect (otherwise I’m going to end up ruling them all out!) so I’m feeling in the same boat as you at the moment. It’s frustrating that they have to include beef gelatin, you’d think by now they would be able to use an alternative. Let’s hope they can find one in the near future!

Thanks for the support x

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Thank you for your response AngC.

That is very reassuring to hear about your case and reaction to Pledridy! I am nervous about the side effects and how these are going to affect me but it’s good to know that not everyone experiences all of the listed common side effects, so maybe I won’t either (let’s hope!). I think I could cope with the injection site reactions as I don’t tend to wear shorts or crop tops etc anyway so nobody’s going to see them, I’m most bothered about the listed side effects such as hair thinning/nausea/gastrointestinal changes etc. but I guess everybody is different so I won’t know what will work for me until I try. I hope seeing the different options will help and reassure me that I can do them, so I will bring this up at my next appointment. I’ll also ask again about the frequency of the blood tests for the first year, perhaps my nurse got mixed up.

I’m sorry to hear that you had to start on a new DMD, I hope this one has a better outcome for you. I guess it’s all part of the journey we were specially chosen to have. Good luck with your treatment.

Thank you for all of your information, advice and support!