Barts-MS rose-tinted-odometer ★★★
I belong to an international group that addresses important issues in multiple sclerosis that arise between HCPs and pwMS. For 2020 I have suggested we tackle the issue of ageing in MS. I have been asked why I think ageing an important topic in MS. I have put forward the following list of issues that have come to mind. Can you help me with suggestions or specific age-related issues I may have left off the list? Thanks.
As the MS population gets larger we are seeing more people with MS becoming old. This raises several important issues around their management.
- Most clinical trials exclude older people with MS. Can we be sure that DMTs have the same risk-benefit ratio in the older MS population as the younger population?
- Comorbidities are commoner in the older population. How do these affect the safety profile of DMTs? For example, the recent vascular complications seen with alemtuzumab were much commoner in patients with vascular comorbidity, who tended to older. Another example is PML; there is little doubt that age is a risk factor for developing PML.
- Non-specific white matter lesions or vascular lesions are common as you get older. How are we the MS community going to deal with these when we are so dependent on MRI as a monitoring tool for the effectiveness of DMTs. How do we differentiate between new MS lesions and new vascular lesions? Will the central vein sign be sufficient for this?
- Brain volume loss (BVL) accelerates with ageing. Does this also happen in MS? As we start to use annual brain volume loss as a treatment target in MS should we not be age-adjusting for what is considered normal BVL?
- Neurological function and cognition fall off with age. How do we know that it is ageing or MS that is causing the loss of neurological function?
- Because MS reduces brain and cognitive reserve are pwMS more likely to get other neurodegenerative diseases and at an early age?
- As you get older your immune systems don’t function well. This is called immunosenescence. How does this impact on the safety of immunosuppressive DMTs?
- Ageism is a problem in medicine; how do we prevent it from affecting how we manage older people with MS?
- DMTs become less effective as you get older. How can we be sure they are working in the older MS population?
- How do you stop DMTs in the older MS patient who is stable?
- Are their DMTs that are safer in the older population? Are their DMTs with greater risk in the older population? For example, I am sure anti-CD20 therapies and other continuous immunosuppressive therapies will have a worse risk profile in the older MS population, compared to, for example, cladribine that only causes short-term immunosuppression.
- Does MS cause premature ageing, i.e. premature biological ageing?
- Lifestyle and wellness programmes for helping to manage MS tend to be for younger people. How can we adapt these for the older MS population?
- We are seeing an increasing number of people presenting with syndrome compatible with demyelination in their fifties and sixties. How do the McDonald diagnostic criteria perform in this age-group? Do we need to modify our diagnostic criteria for the older population?
- Most of the information resources for pwMS is designed for younger people. Are the information resources appropriate for the older MS population? Do we need age-adjusted information resources? Do you think the current educational resources for the ageing MS population are adequate?
- How does ageing affect MS? Is premature ageing a driver of delayed worsening in MS?
- What can I do to prevent age-related neurodegeneration making MS worse?
- Do the anti-ageing interventions that work in the general population work in pwMS?
- What about advanced directives or living wills? Are these more important for the older MS population?
- Social isolation becomes more pronounced with ageing and increasing disability. Should there be age-specific social prescribing programmes?
- Sexual function is a problem in MS but is often ignored in the elderly. Should sexual function and other symptomatic problems be looked at in the older MS population to define the problem in this population group?
CoI: multiple
What about the impact of the menopause on MS symptoms/progression? Anecdotally, pwMS have issues, but what to we actually know? Given the number of women in their forties getting DMTs, how do these treatments interact with hormones and the menopause?
What about hormone replacement therapy? This could also include testosterone replacement therapy in men.
Right Emma. I just wanted to add this question. The ageing subject is very interesting!
What about frailty in MSers? Surely this is a big problem and distinct from that which occurs in the normal-ageing population?
Foot care – cutting toenails, etc.
Malnutrition? Older people often stop shopping and cooking and eat ready meals that are not very healthy.
Diet in the elderly is very important.
Agree re comment below – I was specifically going to mention osteoporosis/bone density. Impact of menopause and risk of osteoporosis not discussed at all with me by MS professionals at the time of menopause. Only discovered after hip fracture after falling over – which in itself was probably caused by MS. Definitely more awareness and education needed.
Yes, osteoporosis is an issue with MS even when one is ambulant!!!!!
Not very nice at all.
Why is osteoporosis an issue with MS?
Grooming is another important aspect of self-care that gets neglected in the elderly. I am sure this applies to pwMS as well.
How about the microbiome, bowel problems, probiotics and ageing?
Bladder problems, UTI, antibiotics and ageing?
Similarly and sometimes co-existent with menopause is the impact on, and of, cancer treatment alongside MS. Chemotherapy toxicity and intricacies of dosing chemotherapy when already leucopaenic thanks to fingolimod are simple examples and surely will be a more common scenario as MS population ages – with undoubtedly many more issues and nuances than these, even before potential increase in cancers with DMT’s.
Very important topics, especially differntial diagnosis and treatment stragtegies of MS in elderly cofusing sometime. The approach to menopause and accompanying conditions seems to be an important part of the treatment and follow up of pwMS also.
Maybe DMTs cause premature ageing. Starting Copaxone in my forties my very regular menstrual cycle was disrupted from the first month before stopping altogether, this of course was blamed on my age. My hair turned white and my 2 front teeth loosened. My whole body was stiff and painful. Upon stopping Copaxone a few years later, my menstrual cycle returned to normal, my hair colour returned and the pain and stiffness improved dramatically.
‘Maybe DMTs cause premature ageing.’
I think I mean that it may look like it but it’s actually the side effects
When I started Copaxone, I started getting quite a few fine, white hairs on the crown of my head. I was in my early/mid-30s with no other grays. When I stopped the med, those hairs either fell out or reverted to a darker color, as they disappeared entirely. My former neuro told me it was impossible for the medicine to be connected, and you are the first person I have ever heard say (roughly) the same thing. Maybe it was coincidence, but it was really odd.
Prof G,
Happy New Year.
“I have suggested we tackle the issue of ageing in MS…. I have put forward the following list of issues that have come to mind.”
Is this really about tackling the issue of ageing in MS or simply listing out all the grim things that those of us with the disease can look forward to if we reach our 50s and 60s?
Surely, all these issues (those resulting from MS) will fall away if we are able to stop disease progression. Wouldn’t it be nice to give all MSers (given that it’s one disease) a poly pill which addressed the underlying cause (a virus), the immune system response, and the smouldering inflammation which destroys brain cells and connections and leads to the grim outcomes listed some many times on this blog?
Barts have had the courage to put their head above the parapet, but I do wonder what is being achieved in the other U.K. MS centres of excellence and indeed internationally. We don’t appear to be moving on with addressing progressive disease, or delivering therapies to protect nerves or encourage repair.
Once again, thank you Barts for all your work. Other research centres need to start delivering. If the MS Society achieves its aim of raising £100m, I hope they look at track records when dishing out grants to the MS research centres who will be quick to submit their application. No one diagnosed today in their 20s should have to face old age with the issues listed in your post.
In 2018 there was a report in Neurology that said late onset MS in women age 50-64 had more than doubled.
This means your questions are even more pertinent as they apply to two populations: those diagnosed in their youth and those who come to it late.
Though I think it’s a misnomer to use the label ‘late onset’ Though not diagnosed until age 51 there’s the fact I had a bad bout of glandular fever in my teens and all the memories of being nicknamed ‘dormouse’ by my family and being teased by all and sundry for being a slow walker. Then there’s the memory of losing sensation when delivering my son age 30 and having to be instructed when to push. Also in my 40s not owning up anyone that I would work in the mornings and then sleep before my son came in from school.
I think that MS should be considered one disease that is almost life-long and all research and HCP response/input etc needs urgently to reflect this.
Re comment from Fi (12.44), if there is more late onset MS being diagnosed but this is perhaps MS which has quite dormant and unnoticed in these individuals for many years, what is it that has kept it quiet for so long? Is there a correlation between their earlier lifestyle/diet/medical history and the way they presented? Conversely, is there something common to these people at time of diagnosis which might have kicked it off or worsened it?
This list is great! I’ve also often wondered how DMTS work in an aging population that’s had MS for years versus a population that’s newer diagnosed?
Hi Prof G, thank you for addressing the elephant in the room, as always, in my case! I have to say your list is extensive & covers most of the probs. Albeit that each individual has different journeys when you reach the other side of 50! I have experienced since firm diagnosis in Apr 2016, cardiovascular disease with urgent stent surgery, gum disease (& I promise I look after my teeth!) oedema in certain heat climates (oh joy) daily pain levels that have resulted in an urgent referral for psychological help in dealing with pain. Difficulties with the stomach, bowels & to be honest all the usual incontinence & sexual health probs too! I have also battled most of life with osteoarthritis, which is in my hands, knees, neck & back. My walking has gone from short distances to staggering in short bursts with a cane. The most difficult anyone has to deal with also when reaching these milestones – is caring & looking after teenager children and elderly parents with dementia. I’m caring for the others & I have a run ragged husband who works hard & has shift work patterns, including nights that impact on all our lives. So when I reached 50 4 yrs ago, I thought okay I can deal with MS but what about all the ahove and oh forgot to mention the menopause, that has resulted in HRT & IUS, which begs the questions…”What the Bleep Happened in my life when I reached 50! Jokes aside, I obviously feel better now that I’ve off-loaded but I would very much like to endorse all your efforts to help the MS teams understand, how things are very different when you reach your 40s, 50s, 60s, 70s and hopefully 80s. All the degeneration needs to be age-related – logged, understood and then your MS should be measured completely separately and for us as patients and also HCPs understand how to treat & support you. Some DMT’s may increase the ageing process so why would you go ahead with a treatment if it potentially puts you in the next stage quicker!
This generation of the say 50s plus is now not only working harder, longer, looking after ageing relatives, children (if you had them in your mid-30s plus) with additional financial worries of how – who and what will become of the MS patient (or anyone who’s affected by a degenerative disease) when they need caring for – which is ironically now for anyone who is diagnosed later on in life! Do I continue to work myself into a brain fogged, fatigued, socially not able existence & who will cut my blimming toenails & make me a cup of tea! Employers aren’t listening to parents/husbands or relatives if you have someone with MS to care for, I know this for a fact as my husband works for a global corporation & they really don’t care as it impacts on their turnaround & profits!
With regard to your list – can you add & I not medically sure how to put this but cold limbs/temperature? Cold limbs that transmit burning/gnawing pain messages to the brain. When in warmed or in say a warm bath (or pool) pain is not severe & sometimes quashed and also tinnitus, which haunts me daily 🙁
Thanks for reading and to everyone. Please keep up all the great work you all do – keep talking and keep relationships going as I do believe it helps tremendously with communicating & clinical outcomes too 🙂
All the best,
Jane
How about a life course approach that brings in historical context … not only about ageing but the age we’re living in… a multidisciplinary framework that includes sociological perspective..?
Agree on the osteoporosis issue- is it due to diet, aging, genes or all those steroids? Clinical trials have thrown the aging population to the winds- most trials exclude pwMS older than 55. I understand that they want to avoid teasing apart the comorbidity issues but it leaves aging people without useful data- esp. if you are diagnosed later in life. For folks in the US, it matters immensely which DMT and how it is administered in regards to whether it will be under Medicare part B or part D. If under part D, the cost may very well be out of reach. Then what? As I age, I am tempted to switch to cladribine even though on ocrevus I am relapse free and have no detectable new lesions b/c I won´t be able to afford to stay on ocrevus. In addition to social supports, I´d like a concerted look at balance with an eye towards fall prevention. Studies with MSers and tai chi and/or qi gong need to be done.
Hi Anon, MS and tai chi has been studied, in terms of balance and also mental well being. The MS News today website discusses it.
What about the impact of exercise and fitness of pwMS. I’m now at the stage where I cannot walk unaided so exercise is something that is easily bumped off the daily to-do list and now I am chronically unfit. My MS was definitely getting worse and I was not feeling good either.
I have taken a decision to supplement my weekly pilates class with some simple exercises such as regular sit-to-stands, walk 8 aisles of the local supermarket using a trolley as my rollator and walking about the house as much as possible. I’m going to buy some therabands and use them soon. No, I never build up a sweat but I feel fitter and more in control of my life. Also I feel that I have taken some steps to improve my health. My belief is that regular exercise that is at the edge of my comfort zone does me good and might even keep my MS at arms length for a bit longer. I also feel better off mentally
I think fitness and exercise ought to be on the agenda of your international group for people with advanced or burning MS
BTW I dislike swimming because for a 20 minute swim it takes me over 90 minutes to get undressed and dressed again, all seems a bit pointless.
Excellent- agree with all of that “ use it or lose it” – I go to a pilates close where one member arrives on a mobility scooter ( taken into class) and there are 5 hip replacements between us – the class is good for us physically and mentally.
You may possibly think some of the vids on YouTube seated yoga and the MS Gym providing seated exercises and stretches of benefit.
Hi Patrick, Pedal exerciser’s I understand are very good. Can sit at home, watching TV peddling. They cost from £15. Can also put it on a table and exercise, peddling with arms.
“As we start to use annual brain volume loss as a treatment target in MS” since when? How is this measured?
I also was diagnosed with degenerative disc disease.
What is causing the pain? MS or The Degenerative Disc Disease pressing on the nerves, or narrowing of where nerves exit?
Yes 55, with Primary Progressive.
Multitude of GI issues, and a Rare H63d Gene that caused Iron overload, with 17 phlebotomy so far. Listed on Rare diseases.
Everchangingms.blogspot.com
JoeY
It’s kind of an adventure this disease.
As others have said, I try to take care and slow its progress.
But I also think I might prefer to die from something else.
Need to take up a dangerous hobby,
Snake charming?
Tiger taming?
Suggestions?
This was a distinctly different discussion than most I read with MS. I was diagnosed 16 years ago at 51. I related to every question on the list. I retired from a full time position in healthcare just this past year at 67. I wrestle every day with questioning if my increasing mobility limitations are age related or MS. I have decided it is both and this blog reinforced my belief. It was very affirming to me that others are asking these same questions.
My mother is 84 and has MS for years. She is also Narcissistic, has ED since age 19 and anxiety. Needless to say, her behavior has always been off. I believe she has dementia. Her ability to get the proper interpretation out of details is worst then ever. She has been depressed for years mostly due to health declines. She won’t accept the reality of a situation. So the confusion and inability to even call me at a specific time is nonexistent. She says she sends emails the are not received. She can be be irrational. We live out of State.
How is the best way to communicate with her?