Haa anyone that has been diagnosed with MS in their 60s and 70s been offered and undergone treatment?
My Mum has a provisional MS diagnosis at 76 after lesions were found on brain and spine MRI.
She’s had symptoms for over 15 years.
It seems most of the MS drug trials are on people up to the age of 55 and there’s a lack of evidence for people over 55.
I’d be interested to hear others’ experiences, as I’m hoping that there are potential treatment options available.
Thank you for reading.
I was only diagnosed in 2023 at 55, and because my neurologist was dismissive refused treatment. So I got referred to another hospital for treatment which I started just before I turned 56. I’m on kesimpta, and been on it since October. I’ve experienced several relapses now and have never fully recovered from any relapse. I hope your mum gets the help and support .
I live in Scotland and was diagnosed last year at 62. So far I have limited symptoms but my Neurologist is keen to help and I’m currently on Teriflunomide. I started on Avonex but that didn’t agree with me. Age has never been discussed.
Sorry to hear about the diagnosis. It’s worth looking out for any “newly diagnosed” days run by the MS Society/NHS trusts. I went to one of these and it was incredibly informative, great chance to put questions to neurologists and nurses.
What kind of MS has your Mum being diagnosed with? Is it relapsing remitting or progressive? That makes a difference to treatment options.
I understand MS diagnosis is less common for people in their 70s - but my (MS specialist) neurologist told me he had diagnosed someone in her 70s, so clearly it does happen.
There may be treatment for symptoms of MS, and/or DMTs to alter the course of disease.
If your Mum has relapsing remitting MS, presumably she is still at risk of relapse. So on that basis, they should offer her a DMT? Yes, the trials are on under 55s. They are also on people without co-morbities - they like to pick “ideal” candidates. But in the real world, the results have to extend to the rest of us…younger, older, with comorbidities etc.
Having said that, DMTs can weaken the immune system. That’s the point, in a way, since MS is an autoimmune disease. But it can make you more vulnerable to infections - some of which might be more serious at 76. So my guess is neurologists have to weigh these things up. How active is your Mum’s MS? Has she had recent relapses, for example? They might look at how stable the MRI is over time.
The advantage of the DMT is that, if it is effective, it can prevent the relapses which might, in turn, cause irreversible disability.
There have been some studies done on whether to “stop” DMTs once people reach a certain age, if they are stable. The idea was, perhaps they don’t need the DMTs and long term use might do more harm than good. The results I’ve seen were poor: i.e. even older people did benefit from continuing the DMT.
So… lots of issues here. I think it’s really important to make sure she has an experienced MS specialist neurologist and maybe get a second opinion on treatment…especially if they either exclude her purely on age grounds or seem not to be thinking it through carefully. Once you are on a DMT, regular monitoring can help pick up with things like a dangerously weak immune system.
Another thought: what vaccinations can your Mum get - covid? flu? shingles (very effective new shingrex vaccine)? - It’s often best to get vaccinations before you start on a DMT in any case.
Final thought: can anything be done to work on any other comorbities she may have?
Hi BusyLizzy. A quick comments. I don’t think it matters at all/ makes any difference that the trials were on people younger than you Mum. I’m 71 ( diagnosed early 50s) and taking Avonex since diagnosis. As it happens I was talking with my MS nurse recently about my treatment and the general message from her was that it was important to keep on with the treatment.
P.S Avonex has kept me free of new lesions.
Thank you. She’s up to date with Covid, flu & Singles vaccinations, though missed her RSV. They’re going to do a catch-up for those that missed out last year.
Mum has an appointment for late May with an MS specialist neurologist. That’s a private appointment. Nothing through from NHS yet and we were told that the NHS would be quicker because there is a rapid new-MS diagnosis service.