I have a new neurologist, I saw her today, and she informed me that she thinks that I should come off the medication that I have been taking for years that has helped me greatly.
She thinks that now I am 66 that they should stop treating me, as in her words (how long do we continue to treat you).
I was astounded as I was on the drugs trial in the uk to get it licensed.
Surely this is ageism, it’s as if you get to a certain age and they discard you. I have known people that have been forced to stop taking their meds and they have declined rapidly. Her answer to this was yes that can happen with rebound relapses but we can treat those.
Can I refuse to come off my meds? I am really frightened by this because I am now a widow and I do not want to become a burden on my family that have their own lives.
Thanks
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Hi Julie. This is an interesting question because I saw my neuro this year in person for the first time since Covid and he said they are looking at how long to continue DMD treatment once we get older. Opinions seem to vary between for example age 60, 80 or to continue indefinitely. This worried me too as I have been stable for many years now and would prefer to stay that way!
They are looking at what is going on with the immune system behind the scenes. At this point he lost me so I don’t remember what he said about that but I just wanted to say it’s probably not your neuro on her own but a recognised area of research currently ongoing. It seems that often the disease activity declines in older people but I prefer not to risk it and thankfully he was happy for me to stay with my current treatment.
Kestrel (age 65)
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This sent a chill down my mid-60s spine, I must say. I am sorry you’re in this fix: it’s one I dread myself.
All I can suggest is that you makd clear that you want to stay on the medication that keeps you well. It seems to me that there is much uncertainty in this area, and I hope that this means there is continuing space for patient preference.
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Hi Kestrel
Those are nearly the exact words she used, so it must be something they are considering. I just think it’s ridiculous, I just said does that mean that I don’t have MS any more, and she said no so I said well surely it’s better to keep us healthy than to be a burden on our families and the state.
It frightens the hell out of me, as I know several people who have been forced into stopping their medication only to have bad relapses.
She wants me to have another MRI even though I had one not long ago, probably to justify this.
.
N
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It just appears that it’s not our choice, it’s made me feel worthless.
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Hi Julie.
Sorry to hear this - I’m fairly new to it all and, still finding my way around but, surely common sense says that you receive treatment for as long as need be.
I find the suggestion of an age limit for this quite shocking 
Am I supposed to book my slot at the knackers yard for 20 years from now? 
I hope you manage to stay well for as long possible 
x
Jon.
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Hi @julie00 i think that if I were you I would be saying that people continue to get relapses and new lesions into their 70s! I am an example of this with a new lesion and associated disability when I was 71. I would also challenge your neurologist in very clear terms ( and perhaps in writing) by asking for written confirmation that I won’t get more relapses/ lesions and associated symptoms if I come off treatment! As for treating rebound relapses I would be asking for written confirmation that any such relapses won’t leave me with any new or worse symptoms
Similarly, I would ask for written confirmation that ending my treatment definitely has no link / basis in saving money and is entirely for the benefit of my health and long term future
You could also show her this ( hope it opens for you) and basically say that treatment options are supposed to be a joint decision!
https://pn.bmj.com/content/25/1/18
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I had a similar conversation with the MS Nurse recently. She explained that because as we age, our bodies immune systems are not as robust, so they have to weigh up continuing MS treatment which can adversely affect the immune system vs stopping treatment and allowing our immune system to be more able to fight other threats. She was also of the opinion that symptoms tend to reduce as we get older anyway (I’m not sure I agree with her on that one!)
I agree though that it does sound very ageist, but I suspect it also has as much to do with availability of funding and allocating resources appropriately. If you feel very strongly that you should remain on treatment, there is nothing wrong with fighting for the right to do so.
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This is really interesting, thanks @Hank_Dogs
but I believe in 
