I think that however prepared you are to be told you have MS, it still hits you like a brick in the face. It takes some time to come to terms with it, emotionally. And in the meantime you don’t really know how to feel about it. This can then lead you to be irritated by some aspects of the diagnosis which are in a way, safe to be annoyed with. Such as the choice of DMDs.
We are given the choice of DMDs in order that we accept the risks alongside the benefits of each DMD. The benefits of each drug is measured in the average relapse reduction rate. The risks are the side effects which each drug has the potential for. So the safest drugs have the lowest relapse reduction rate, but either the least number of side effects, or the potential side effects are likely to be easier to get over.
If you have a look at the https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid you can see the wide variety of drugs which are potentially available, and their possible side effects. It’s important that you know what risks each drug has the potential for.
You are not likely to have a completely free choice of drugs. Some of this is due to what prescribing centres have been set up in your local hospital. You are also restricted to the drugs for which you qualify, if you have ‘active’ or ‘highly active’ MS, you’ll qualify for different drugs to those available if your MS is less active. Then there’s what the neurologist prefers as well as your own personal choice.
So you’re pretty much guaranteed to have the option of Tecfidera, Plegridy, Copaxone, maybe Aubagio and maybe the older beta interferons like Rebif and Betaferon. You might have the option of Lemtrada, but this is a much riskier proposition and you need to have your MS classed as very active for this. Tecfidera is the first line drug with the best relapse reduction rate (about 50%) and it’s also deemed to be most successful at reducing relapses when it’s the first DMD you’ve tried. It has potential side effects, but pretty much nothing that is difficult to get over if you stop the drug. The injectables, Plegridy, Copaxone, Rebif and Betaferon are all about a 30 to 35% reduction. Aubagio is a tablet, but in my opinion is the worst of all worlds, only a 30% reduction rate with more potential side effects than the injectables.
Tysabri is a second line drug, so you’re not likely to be offered it as a first DMD. But it’s a great drug, monthly infusion and with side effects that are easy to get over if you nee to stop the drug. Unless you have antibodies in your system for JC virus, but even then your risk factor is quite well understood now. So as a second line drug, it’s great.
Lemtrada has the best relapse reduction, but it’s a really heavy duty drug with some quite serious potential side effects. If I were in the early stages of relapsing remitting MS and were otherwise fit and healthy; given the option, I’d go for it. But later on in RRMS, with more serious disability to begin with, I’d be a lot more cautious. And the side effects need really careful consideration.
It’s a lot to think about. But talking the options through with your MS nurse (assuming you have one, if not, contact your neurologists secretary and ask for the contact details) is a good idea.
And of course, ask questions on here. There are people who’ve taken all the different options. Some have experience of more than one drug. Everyone who’s looked into the various DMDs maybe has their favourite.