Hi all, Had appt with MS specialist and he has diagnosed me with MS. I now have to research and think about which treatment to go for. I have RRMS which is active. Just curious which treatments other people have gone with and why. The specialist mentioned Tecfidera but I’m not sure. Thanks in advance Helen
Sorry to read of your recent diagnosis. It is not a club anyone wants to join and I’m still coming to terms with what it all means. The drugs choice is such a complex one - driven by your and your neuros attitude to the different risks you face. The risks of the MS and the risks of the side effects - with an overlay of issues such as ease of administration and, if relevant, pregnancy.
I was diagnosed with active RRMS in June and received my first round of lemtrada in August. Whilst my MRI showed a fair number of lesions (brain, brain stem and all down my spine) the only clear clinical symptoms I’ve had to date have been numb toes (fixed by a couple of days of steroid tablets). I know, given my mild symptoms, my decision to jump straight for lemtrada was an aggressive one - but it was supported by my neuro team for which I’m grateful. MS aside, I would describe myself as pretty healthy and active. I’m 37 and work a full time job as a corporate lawyer, get to the gym most days and spend my weekends and holidays hiking. It’s a life I love and I’m determined to do what I can to keep it - and whilst the longer term side effects of lemtrada scare me, they scare me less than the impact I fear MS could have on my life. For this reason it was the right choice for me - and the latest round of long term trial results (showing not just significantly reduced relapse rates but also improvements to existing damage and normalised rates of brain atrophy) further convince me of this. It’s early days for me (I’m only 4 months post round 1) so I can’t say what impact it’s had on my disease and it will be 5 years before I really understand whether I’ve picked up a longer term side effect. However, today I feel well and bright and full of energy - and optimistic I’ve given myself the best chance of staying that way. The infusion itself was very uneventful and I suffered no complications/ infections/ steroid crashes or MS flare ups. I’m hoping round 2 will be as straight forward. Assuming it is, 4 months after the infusion I can have a proper conversation with my boyfriend about whether we want to try for a baby - before I’m 40 and without having to worry about coming off drugs to try and conceive (FYI - we’ve long thought we probably don’t, but felt quite thrown when asked by my neuro at our first appointment given the way it feeds into drugs choice!)
Obviously not all experiences of lemtrada are as easy as mine - but if it’s something you want to consider I’d be happy to answer any questions.
There are lots of people with very positive experiences of tech on this forum so I’m sure one of them will be along shortly!
Good luck!
K
hi helen
as you have been told that your ms is active you will be able to choose one of the big guns.
that is ones that most of us can only have when other drugs have failed.
these big guns are tysabri and lemtrada (there is another newer one but i don’t know it’s name)
these 2 are given by infusion. they have the best rate of reducing relapses.
tecfidera has a good rate too and is a tablet twice daily.
i currently take tecfidera and it’s so easy.
check out ms trust website and ask them to send you their literature on choosing a DMD.
good luck
carole x