Good morning everyone. I’m recently diagnosed with Active RRMS at aged 49. I’m seeing my Neurologist next week and will be prescribed DMDs. My MS Nurse has advised me to look at all the relevant drugs and to have an idea of what I’d like to take. I’m looking at them and am just going round in circles! Can anyone offer any advice please or give details of their experience with DMDs. Thank you.
Hello
Have you seen MS Decisions aid | MS Trust ?
If you’ve been given a few DMDs to consider, the decision aid might help. If of course you’ve just been told to research them all, this will indeed be a confusing maze.
The other place to look is of course on this site. See https://www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifying-therapies
The drugs are divided into ‘Moderately’, ‘More’ and ‘Highly’ Effective. (The Trusts Decision Aid is good for looking at the categories, while you might find more detail on each drug on the Society page.) So depending on how active your MS is, you’ll have options from either the Moderately Effective plus Tecfidera, or from the More Effective (plus the Moderately group). If you have Highly Active MS, you can add Lemtrada and Ocrevus to the list of choices.
Personally, I’m by no means the best person to tell you about my experiences with DMDs. I’ve got a rotten body that isn’t very good at handling drugs, so have had side effects that made taking 3 out of 4 DMDs that I’ve tried impossible.
Your best bet really is to see what you have the choice of and look at those drugs. Asking for peoples experience is often useful, but you do have to remember that we often react very differently to the same drugs.
I wish you good luck in your choice. Just keep in mind that if one drug doesn’t suit you or your lifestyle, you should be able to swap to another.
Sue
I started on Rebif in August. The initial 8.8mcg in my thigh was no problem. When I went to 22mcg in September I added abdomen stabbing as a variation. Just before October I started the full 44mcg dose and found that more painful/cumbersome. I phoned the helpline and an MS Nurse talked me through resetting the applicator. It is still a little cumbersome and often a final globule of the titration “leaks” from the injection site straight afterwards. I m not the biggest fan of needles but 3 seconds as the injection duration is starting to annoy. I misplaced an abdomen injection (across from my dominance on the left side) and caught either a nerve ending, blood cell or muscle such that I have painful ‘aching’ bruise. I am probably a little more impatient than I was but I want an injection completed soonest. Sorry for wibbling, but at least it is off my chest now. And… relax.
Thank you for your replies.
I am also 49 and recently diagnosed with Active RRMS. I am currently researching all the DMDs. And reading the forums of course. As I have had only one relapse not all the DMDs are open to me, just the moderately effective group. From what i have gleaned so far, there is very little to choose between this group in terms of effectiveness, and that choices often come down to ease & frequency of application, different side effects and so on.
Thank you for your reply. It’s been a bit of a tough year for me, but could be worse .Hope you are coping with your diagnosis. It’s tough sometimes, isn’t it? The DMDs are a bit of a minefield, I’m concerned about some of the side effects, but I’m probably over thinking them. Good luck with your treatment.
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I’m in the process of deciding which DMD to choose. I admit it’s a minefield. I started off feeling petrified of the side effects and the whole idea and then I changed to let’s just give them a try and see what happens. I’m a serial overthinker so this approach isn’t easy for me, but I’m trying my hardest to stick with this way of thinking. I’m putting my trust in my MS nurse and just going for it. MS has taught me a lot about myself so far and it hasn’t all been bad. In fact, I’m really proud of the way I’m going and you should all be too. We’ve got this!
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