I was diagnosed with active RRMS in July and am awaiting to start Kesimpta in November - I am 56 so I am aware that I am a late onset MSer.
I saw my neurologist today and they have just returned from an MS conference where there was a presentation regarding the volume of older people being diagnosed with MS. My neurologist went on to say that I would be on Kesimpta for a while then they would look at downgrading my DMT to a drug with less efficacy?
Is this a thing that normally happens as I havenāt read anything any where?
Great bedside manner there. Neurologists, donāt you love them? It sounds like your one had come back from a conference all enthused and excited and completely forgotten how that might come across to a real person rather than the neutral statistics they have had a lovely time playing with at their nice conference. Try not to let it get you down. See how you do on the DMD. If youāre doing well, thatās always a powerful reason to stay on it if thatās what you want, further down the line. You can cross that bridge when you come to it.
Hello Caroline,
Iām a RRMS-er since 2000. Back then I was sceptical about DMD, I didnāt want to be a guinea pig for drugs companies.
Even more so when Infusion Reconstitution Therapy gave me more problems than the multiple sclerosis.
I felt they were the ones untrustworthy.
It took me a while to regain their trust again.
So now I start on Kesimpta like you; I was previously on Lemtrada and Avonnex before that.
Surely if a drug works, why would they shift you onto a less effective one?
JP
Hi, I have RRMS and am 59, diagnosed 2 years ago and am on Cladribine (Mavenclad). I donāt think its that uncommon to be older when diagnosed, more about what stage / type of MS. Ask the neurologist (or MS nurse) to explain the comment as you didnāt understand what he meant and its been playing on your mind.
Iām interested in this - as someone diagnosed at 50 (now 56) Iāve just started Kesimpta. I wonder whether weāre just considered a waste of resources after 60? Iāve not had any relapses on MRI since the biggie tht led to my dx which were 2 spinal cord lesions. History indicates I probably had it since around age 25. So perhaps Iām Secondary Progressive, who knows!! Either way my MS Neuro has managed to secure me Kesimpta, for now at least.
I think there is a problem in the minds of some Neurologists lumping all people of the same age together not considering how long they have had the disease.
There is some evidence that disease activity does decrease over time, but it does not make sense to lump in those who are diagnosed at 62 with no significant symptoms identified retrospectively before 60 in with those or the same age who have suffered for over 40 years.
One problem is that many drug trials have cut off at 55 so there is little evidence for treatments for around the 15% who are diagnosed after that age.
If that is indeed so - the ālack of trial evidence in over 55sā thing - surely there is no more evidence to say they donāt work than there is evidence to say they do? So the case to come off is no stronger than the case to stay on? Or am I missing something?
Thank you Alison, I could be being a bit emotionally concerned with her comments. However when I was first diagnosed she recommended going for the higher efficacy due to the activity which was presenting.
As you say could be that the neurologist had come back excited from her conference
Hi C,
I hardly feel any side effects after injection; I always pop a painkiller before I shoot, just in case.
Only good effects, my constant back pain has completely disappeared; just hoping Iāll be able to hop, skip and jump soon enough.
In comparison to Avonex, once a week, Iāve not experienced any achiness after with Kesimpta.
Enjoy the wedding,
JP
I think this debate on whether to āde-escalateā DMTs for older people with MS has been kicking around for a while. And my impression is that they donāt really know. Thereās this idea that your immune system can get a bit weaker when you are āolderā, but what is āoldā in this context - over 70? over 80? Iāve seen conflicting reports about the effects of stopping/deescalating, and I certainly agree that āthe trial cut off at 55ā is not a reason to stop treatment.
There is a separate issue, though, about older people, with any type of MS, being dismissed as somehow ānaturallyā disabled, āwhat can you expect at your age?ā - as if the general population over 55 or 60 were similarly afflicted. Itās a peculiar form of ageism if it kicks in earlier for those of us with MS. We need to point out politely that 1) weāre not that old, actually, and 2) age (or disability) does not make you somehow less worthy of care compared to a relatively fit 25 year old.
I listened to a talk by a Spanish neurologist who said something like: years ago, we didnāt really worry about the menopause in patients with MS because, well, by that age [50] their health was in such a state we had bigger worries. Now they are reaching the menopause in better health than before and we have to think about the effectsā¦
So for neurologists, they see a patient cohort that changes over time, has new characteristics. Whereas for us, we have in mind our own lives and those of our peers without MS.
Also on kesimpta for nearly a year now and thinking that I will only take it for another one. 48 years old. I think it is more of a risk of infection as your being immunosuppressed for so long. The monthly top up keeps the immune system down. Eg Covid vaccines wonāt work and issues when you get it as not all the antivirals work either.
