Feeling old and unworthy

Hi all

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 haven’t read anything any where?

Caroline

Great bedside manner there. Neurologists, don’t 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 you’re doing well, that’s always a powerful reason to stay on it if that’s what you want, further down the line. You can cross that bridge when you come to it.

Hello Caroline,
I’m a RRMS-er since 2000. Back then I was sceptical about DMD, I didn’t 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 don’t 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 didn’t understand what he meant and its been playing on your mind.

I’m interested in this - as someone diagnosed at 50 (now 56) I’ve just started Kesimpta. I wonder whether we’re just considered a waste of resources after 60? I’ve 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 I’m Secondary Progressive, who knows!! Either way my MS Neuro has managed to secure me Kesimpta, for now at least.

I am 58 with a dx last year. I have started on brabio

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.

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A very good point!
(Alison, aged 61!)

Recently diagnosed with active RRMS Just Started vumerity, also told I’ll only be on it for 2-3 years max… 54 year old. crd you may have something

If that is indeed so - the ‘lack of trial evidence in over 55s’ thing - surely there is no more evidence to say they don’t 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 :slight_smile:

C

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Very true !

I will see how I go!

May I ask if you had many side effects after the first injection ? I have my son’s wedding a week later and don’t want to be suffering !

C

A good point Dave C , thanks maybe I will email the nurse and see what she has to say ! Thanks

Thanks Minnie Mouse, I will keep you posted if I hear anything further !

How are you getting along with Kesimpta ?

C

Thanks Teddy Bear - how are you getting on with your DMT ?

C

Thanks CRD ! A very good point ! With so many late onset diagnosed surely it is time for a re think by the powers that be ?

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 I’ll be able to hop, skip and jump soon enough.
In comparison to Avonex, once a week, I’ve not experienced any achiness after with Kesimpta.
Enjoy the wedding,
JP

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Hi

I am feeling fine but will not really know if working until I have had another MRI

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I think this debate on whether to “de-escalate” DMTs for older people with MS has been kicking around for a while. And my impression is that they don’t really know. There’s this idea that your immune system can get a bit weaker when you are “older”, but what is “old” in this context - over 70? over 80? I’ve seen conflicting reports about the effects of stopping/deescalating, and I certainly agree that “the trial cut off at 55” 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 “naturally” disabled, “what can you expect at your age?” - as if the general population over 55 or 60 were similarly afflicted. It’s a peculiar form of ageism if it kicks in earlier for those of us with MS. We need to point out politely that 1) we’re 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 didn’t 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 effects…

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.

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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 won’t work and issues when you get it as not all the antivirals work either.