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Dmd advice

There is loads of info on dmd I know But was really after some advice on Why you picked the treatment your on ?? Because I have read and read and it’s fryed my brain So just wanted advice frome real casses. Thanks in advance

I chose Tysabri over Lemtrada. I am JC positive so was not an easy choice but what swung it was that if Tysabri does not help then I can try lemtrada, if I had chosen to go straight to lemtrada then I could not use Tysabri if the lemtrada does not help. At least I get an alternative this way round. Yes I have a 1 in 800 chance of getting PML but the side affects of lemtrada are not great either. Your Neuro should give you the pros and cons of each drug, it’s then up to you.

Have you been on the ms decisions website? it gives plenty of information.

I am on Tecfidera. I was on rebif for ten years but then failed on it - i had to change.

This is my opinion only - you have to make your own mind up :slight_smile:

rebif/avonex/extavia/copaxone are in my opinion ‘old drugs’ - i feel things have moved on from this.

Tecfidera is the most effective first line treatment on the market at the moment. (50% reduction in relapse rate)

Plegridy and Aubagio are also new drugs but not as effective as Tecfidera.

If your ms is very active you need to be looking at second line treatments - Gilenya/tysabri/lemtrada.

It’s a case of doing your research and dwindling them down. Side effects have to be taken into account as well but unfortunately until you start the dmd it’s not possible to know what exactly they will be for you personally.

PML risk is also something to consider and also how the drug is administered. I personally at the moment didn’t want monthly infusions in hospital so i ruled out tysabri (for now) but its a really good drug. I wanted to try an oral drug which i could take at home. Tecfidera is the most effective oral drug so that’s why i chose it.

There are side effects to each drug so educate yourself about the common ones.

Iv’e been on Tecfidera 16 months. I have no stomach issues but i am still occasionally flushing like a tomato! lol!

Some people believe in going for a second line treatment from the very beginning to kick the ms hard at an early stage. It’s really tough deciding what’s best for you as the stronger drugs sometimes have more side effects to consider.

Lemtrada will be on my radar if my ms gets more active or if i fail on Tecfidera but for now i have made improvements by moving from rebif to Tecfidera so i am staying put whilst my ms is stable.

When i was diagnosed i only had 4 choices given to me - we are so lucky things are moving forwards.

Good luck with whatever you decide - let your neuro guide you as he knows how your ms is behaving.

Best wishes

Teresa

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I went for the most effective treatment (Lemtrada). I liked the fact it is an induction therapy as a posed to ongoing tablets / injections and wanted the most effective treatment there is. Reasons being, I may want children in the future and you cant get pregnant while on a DMT. As someone who travels quite a bit I dont have to worry about taking medication aboard with me. I value my independence and autonomy greatly and want to stay mobile as long as possible. I can live with the possible risks / sides effects of that particular treatment.

You need to think about your lifestyle, perception of risk and value base to make the right choice for you.

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in 2008 i was diagnosed and had to choose my dmd.

at the time i chose copaxone which although it is a daily injection it only takes 5 minutes and is easy to fit into your routine.

early this year i switched to tecfidera which has a much better success rate at reducing relapses.

that is a tablet twice daily.

you need to know what all the possibilities are.

then think about how you can acommodate it into your life.

side effects, risk and effectiveness are important factors in your decisions.

carole x

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Just my tuppence worth - diagnosed RRMS in 2013, I was offered Tysabri first, but was put off by the amount of blood tests and hospital visits it would involve, and the possibilities of PML… made a reasonably informed decision to go onto something different, maybe less potent but also less risky, and chose Rebif. I’ve got used to it over the months I’ve been on it, and as long as it keeps doing the job, I’m happy to stay on it. As long as I have the Rebismart injecting doobry, and remember to keep up the painkillers on injection days, I’m fine. (As I’ve mentioned before, I tried scaling back the ibuprofen/paracetamol at one point, as things were going so well… I think I got a little over-cocky and failed to take into account the side effects that i’d been warned about with Rebif… they do all kick in if you get too complacent!)