Forum

Angela83

I’ve just today been diagnosed with RRMS,not really to sure where I go from here still trying to get my head around things,I’ve been online looking things up all day and feel even more confused. My neurologist has advised either plegridy or tecfidera and just wondering if anyone can give me any details on these n what one is best to take.

Hi Angela

Welcome to the forum. I’m so sorry you’ve had to come here. But this is a very friendly and supportive place, so we’ll try our hardest to help with questions, worries and fears.

Having just be diagnosed, your emotions are probably all over the place. Don’t try to ‘accept’ MS, ‘come to terms’ with it, or even be terribly positive about it for a good long while. Take your time to understand how you feel about it and allow negativity and a good bit of swearing to happen (trust me, MS deserves it!)

Try to avoid random googling, really, if Dr Google we’re an MD, he’d be struck off for malpractice. Stick to looking at the pages on this site (look at the section at the top of this page marked About MS), you’ll also see local services and support groups in that section. You could also use the MS Trust as a reliable source of information. You can try typing MS Trust + whatever you want information on, eg pain, spasms, etc.

On that subject, have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid The decision aid is designed to help you understand the various drugs that aim to reduce the number and the severity of relapses.

You’ll see that Plegridy and Tecfidera are in different groups as to how effective they are. In general, disease modifying drugs (DMDs) are measured in the average of relapse reduction rates. Plegridy is part of group 1.1 and has an average relapse reduction rate of about 30%. It is an injectable drug so if you’re bothered by self injection, it’s perhaps not the best idea. Tecfidera is part of group 1.2 and has an average relapse reduction rate of about 50%. Being an oral therapy, it’s easier to take, but in the early days can cause some stomach discomfort. Coupled with the relapse reduction rate, each drug has the potential for side effects. You’ll need to compare the two drugs to see what you feel most comfortable with.

Personally, I think Tecfidera is a better drug partly because it’s taken by tablet form and partly because of its efficacy. But you need to see what fits into your life better. Make sure you understand the two drugs and what the downsides are to each before you choose which one.

But, don’t think because you choose drug A to begin with, you can’t change your drug later. If you start Tecfidera (for eg) and dislike taking it, you can ask to switch to Plegridy, or in fact any of the other drugs in class 1.1. Or if you take either drug and continue to have relapses, you may be able to switch to Gilenya or Cladribine, or even one of the drugs in class 2.0

Being just diagnosed, you have quite a steep learning curve, so take your time, talk to your MS nurse (once you have one assigned to you - and if you don’t already have the contact details of an MS nurse, phone your neurologists secretary and ask for the details of your MS nurse) and your friends and family, then make decisions.

If you want or need advice on your drug choices, or indeed any other aspect of the disease, then ask us.

Sue

Thank you Sue,still waiting on details for an ms nurse and have a list of questions.thank you for the reply x