Hi everyone, I was diagnosed with relapsing remitting ms on Friday. My neurologist wants me to start medication and has referred me to a ms clinic to find out about the different types of medication and their side effects. I had optic neuritis 2 yrs ago and after an MRI was told I had a 70% chance of having ms. Which with steroids went away after a few weeks. I undertook a clinical trial as well, but I travelled to Australia for a year before I found out the results. Now I have new symptoms (numb legs and feet and tingling after movement) which I’ve had for 8 weeks. I had my neurology appointment on Friday and he told me it definitely was ms. How can he know without doing good any further investigations. He tells me it’s definitely ms before I’ve even had another scan. No lumbar puncture (not that I want one) just seems strange when some people have so mUchida investigation before receiving a diagnosis. I need to have another MRI on my spine this time. Anyway those that are on medication how do you decide what’s the best medication for you to take? I’ve read about so many different types it’s a mind field I wouldn’t know what to choose. Thank you in advance Dukes
Hi Dukes,
I’m also dealing with a new diagnosis, waiting for a further MRI (next month) to see whether I can be labelled “active RRMS”* and investigating DMTs in the meantime. As I wanted to give you a response (and a bump!) I thought it might be helpful to set out my thinking to date and swap notes (even though I’m not yet on medication). Apologies if this is telling you what you’ve already discovered.
My understanding is that there are three factors which go towards what DMT you are prescribed: (i) your attitude; (ii) your neuro’s attitude; and (iii) the NICE guidance which sets out the NHS’s rules re. which drugs you are eligible for.
There is a general consensus that the sooner you start DMTs the more effective they are. However, the newer DMTs which have the greatest impact on MS progression also carry the greater risk of long-term side effects than the more moderately effective DMTs. There is only one DMT licenced as a first line treatment which is “highly effective” and that is Lemtrada. The attitude of neuros re. prescribing the riskier drugs as first line treatment / where people have “mild” symptoms (no such thing as “mild” MS in my view!) varies.
I’m pushing for Lemtrada. Whilst there are some pretty scary longer-term side effects, my understanding is that if you do get these (30% chance secondary auto-immune disease / less than 1% chance of kidney issues / blood clotting issue) the regular blood tests should allow them to be identified early so that they can be managed. These side effects frighten me less than the potential impact of unchecked MS. My (personal) view is that the benefits of Lemtrada (impact on future relapses / brain atrophy/ possible ability to give the CNS chance to recover) out-weigh the risks (of the next relapse not being as benign as numb toes, longer term damage, progression and increased brain atrophy). The fact that (hopefully) you avoid the need for injections/tablets/infusions for life is also a huge selling point. However, I can understand why other people, particularly those with MS running a more benign course, feel otherwise.
My neuro knows my attitude and, fortunately, he agrees with it and thinks it is a sensible choice. That leaves me with the final box to tick - which is the diagnosis of “active” RRMS (which fingers crossed my next MRI will show so I can crack on).
Resources I’ve drawn on to get to this conclusion (in case you haven’t stumbled on them yet) are: (a) the posters on “Shift MS” (a number of whom are on Lemtrada);(b) David’s Campath story (blog by a chap who was part of the original Lemtrada trials charting his progress over 12+ years); (c) Tracey’s Lemtrada Story (very detailed blog by a lady currently waiting for her second round - and doing very well); (d) Lemtrada UK facebook group (for people going through, or considering, treatment); (e) Barts Blog and (f) MS Trust “Decisions” tool (of course!).
The only thing which could (possibly) persuade me to try something else would be if Ocrelizumab came to market - which seems to have similar benefits without the same risks. However, it seems this is a while away and, even if it were available, I would be wary of anything with less proven efficacy over time than Lemtrada.
Hope that is vaguely helpful?
K
My symptoms to date have been very mild (numb toes for a couple of weeks (100% resolved with steroids) - and possibly vertigo last year (although I was given a diagnosis of BPPV at the time)) - but my last MRI showed multiple lesions in the brain, brain stem, c-spine and t-spine (suggesting my disease is active even if it is not very elegant (story of my life!!).
Hi Katy, thank you for youreplying message. I really appreciate you taking the time to reply and it’s very helpful thank you. I am still waiting for the ms clinic to get in touch. From my own research I’m learning more towards copaxone or Lemtrada. I’m going travelling later this year so I don’t want whatever treatment I choose to impact on this. Everything seems to take so long to get sorted though. I had to wait 8 weeks to be seen for the numbness in my legs and by then steroids wouldn’t help so I have to wait for it to go away naturally (which it is just very slowly). I hope you get the right treatment for you soon Dukes