Hi everyone! I was diagnosed with RR MS in 2000 but with hindsight had symptoms in 1999. Had a few relapses over the first few years then a quieter spell 2009-2015. Small relapse 2015 and a more troublesome one in 2016. My consultant now thinks it is time for disease modifying meds but I am resisting this. Seems too big, scary and extreme a step. Would like to think I can manage with care over diet, taking supplements and using alternative health therapies to support me - or at least give that… read more
There's evidence to suggest you should start on DMDs asap - as well as reducing relapse rates, they help to slow the proession from RRMS to SPMS. So saying, I put it off for a few years too. I'm now on Tecfidera, which suits me. There is a tool on the MS Trust website called MS decisions, which helps you decide which DMD might be best for you.
https://www.mstrust.org.uk/understanding-ms/ms-...
I used this and then read up more on all of them. I then asked for an NHS Neuro who could prescribe DMDs and asked him for Tecfidera. It was just before it arrived in the UK so I had to wait a few months for it. Worth waiting for, in my opinion. I couldn't stand the idea of self injecting.
Bear in mind, DMDs are designed to alter the course of the disease, not to treat specific symptoms you might already have. So as well as VIt D and Tecfidera, I am also taking Baclofen, Amitryptilene and Lyrica. Good luck.
I was given 3 or 4 options, armed with all the information and left to decide myself which treatment to start.
I read up a bit about Tecfidera and they pretty well compare it to Gilenya (or Fingolimod) in performance, it's relatively new and can't remember if it was one of my options. Every DMD comes with side effects and I remember choosing it over the other oral I was offered as it seemed to have less. Just make sure you make an educated decision, it's run by the University of Edinburgh who's interest lies more in getting you on a specific one for their own research purposes, don't be pushed into anything, there's implications for your liver function.
I attend the Anne Rowling clinic at the Royal Infirmary and have been on Gilenya for 18 months. It's made me so much better over that time, there's nothing to freak out about as it's a daily pill with minimal side effects. Think of it as improving your chances even further on top of diet etc.
There's other DMD's both oral and injectable, you'll be given a choice most likely and probably have to spend a day in hospital hooked up to machines to monitor your 1st dose (it's usual to have a drop in heart rate) Once you start you'll attend the ARC every 3 months to give bloods.
A small price to pay for a 50% slower progression rate IMO
been on dmd's since '04. would not be w/o them.
There's several on going threads regarding this topic. Suggest you do a search of this forum using the following key phrases :
"DMD or not"
"Without treatment"