If I understand correctly, research shows that most people treated early with more powerful DMTs (eg in Sweden) have better outcomes than those started on ‘lighter’ (less effective) ones, only progressing to more aggressive infusions when their illness progresses. This seems to be the opinion and experience of Barts’ MS specialist Prof Gavin Giovannoni, who publishes the ‘MS Selfie’ newsletter.
He seems to believe that using the most powerful DMTs to prevent brain atrophy, new lesions or relapses is more effective than waiting until they happen to take action. (Prevention is better than cure, right?)
Where I live, I’m not offered a choice of DMT, although my specialist says that I can switch from Vumerity pills to Ocrevus infusions if I show new lesions on my next MRI this month or if my disease progresses significantly. I think he is restricted by EMA regulations as I live in Spain.
While I was diagnosed less than a year ago and my ‘classic’ MS symptoms are mild, I have been struggling with a very marked increase in fatigue, weakness, loss of sensation in hands, difficulties walking more than 5 minutes and cognitive and mood dysfunction for the last five years now… and currently more with balance issues ( constantly stubbing my toe!)
For this reason, I would like to hear others’ views and experiences on the thorny and confusing issue of which category of DMT is better in the early years after diagnosis. I wasn’t diagnosed til I was 50.
Many thanks in advance and hoping to pay it forward when I’m more experienced with this bewildering condition.
You’ve not said whether you’ve been diagnosed RR- or Progressive MS although with your age 50 at diagnosis and description of worsening symptoms, sounds like you are PPMS. If so, the only licensed treatment is Ocrelizumab (Ocrevus).
We don’t know yet but I agree it’s likely. Was only diagnosed in January and found out it was MS by accident. Will see what this month’s MRI shows. Had bad health all my life so gradual deterioration wasn’t classic MS. I thought it was just the ME getting worse due to peri menopause.
I think taking the most effective treatment offered is a good plan, as is making sure you’d advisors know you want to treat as actively as possible (if that is what you want). I didn’t take my own advice quite soon enough, so that’s sad experience talking, I’m afraid. I should have been agitating to switch up to Tysabri two years earlier than I did, and I would be less disabled now if I had. Never mind: water under the bridge for me. But I do try to encourage others to avoid my mistake.
I think everyone reacts differently to different treatments:
I started with homeopathy for my first treatment: it worked for me really well and I almost forgot I had MS after a decade.
Second treatment was intramuscular: again worked fine to begin with but later began to wane after almost another decade.
Third treatment was intravenous: which I didn’t respond to very well.
I should be starting a new subcutaneous treatment soon: I just have to see how that one goes.
Hope you find the treatment that works best for you.
What were you on instead of Tysabri before and how did it fail you? Are you RR? The only other option my neurologist has mentioned for the future is Ocrevus if my condition worsens (I suspect I may be primary progressive given my age and gradual but consistent progression of symptoms) but that isn’t confirmed yet. I’m currently considered RR. Did you consider and reject or try Ocrevus? It seems less well tolerated than Tysabri.
Avonex. It kept a lid on things for a few years, then didn’t. Unfortunately the relapses in the couple of years pre-Tysabri left a fair bit of permanent damage.
So you mind me asking what your relapses entailed and how long they lasted? I see you think that Tysabri could have prevented them.
Yes, I do think Tysabri would have prevented them because I have been on it for over a decade now with no relapses at all. In my later years on Avonex, I was having waves of disabling relapses affecting my mobility and much else - some of the damage healed over weeks and months, as relapses do, but my MS has always been aggressive and I’ve never had a relapse that has healed completely. These were nasty relapses, so quite a lot of damage was permanent.