I will be 72 in the next few months and after some 19 years on Avonex without any new lesions i am ‘slightly’ surprised to hear that the MRI scan in January showed one new lesion.
I now have an appointment with the neurologist in a couple weeks to discuss ‘treatment going forward ’. Not quite sure what that means but Im waiting with interest!
If your neurologist ever suggests thats it ok to stop using DMT in older age because older folk don’t get new lesions - it isnt and we can still get new lesions in our 70s!
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Hi HankDogs sorry that has happened after your DMT has been so effective for so long.
My neurologist said he didn’t expect me to have anymore lesions once I hit 60.
He thinks MS “burns out” in our 50s and 60s. That isn’t to say our disabilities stop progressing.
Unfortunately what he described as a “tiny new lesion “ was found when I was 61.
I wasn’t diagnosed until I was in my 50s although my Neurologist thinks I’ve had MS for years.
Let us know what your Neurologist suggests in terms of a DMT ?
I’m on Copaxone which I know isn’t very effective but he didn’t want me to have a DMT that compromised my immune system.
I think if another lesion is found I will fight for a better DMT.
Good luck and take care.
I’m so sorry to read your latest news on the new lesions. I hope you’re able to don’t have to wait too long to see your neurologist again to discuss a more effective DMT for you. I’m sure it’s been a shock to the system after so long of being stable.
I was only diagnosed at 55, but I’ve heard that your immune system is meant change as we age so it just proves the point that they don’t get it right every time. I’m on a high efficiency DMT down to the lesion on the brain stem.
for you and hope they don’t keep you waiting too long.
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Hi @animali and @claret57 thank you and I will let you know what my neurologist says about next steps. I’m slightly nervous about going on one of the more effective DMTs - they seem to bring more side effects and risks and in my early 70s I am wondering how well my system will deal with some of the potentially more serious ones. I will see what the Neurologist says. I think he might suggest a wait and watch approach before changing DMT. . I will also ask about relapses in older age, how frequent they are etc. and share everything I learn
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I am sorry to hear that @Hank_Dogs , I think that all the thoughts on age originally are now being proved otherwise, people are getting diagnosed a lot later in age (and also a lot younger).
I think someone in their 70s now is probably equivalent to someone in their 50s a few years ago so kinda of makes sense that the immune system hasn’t slowed down as much as expected.
Hopefully, you can stave off further lesions with a change of DMT, fingers crossed for you
Well, that’s a bit of a shocker isn’t it? I am sorry. You and yours have more than enough on your plates already. I hope that you have a good consultation and thank you for the warning. I’m 63 and I’ll bite the first person who tries to stop my natalizumab. Seriously though, I do live in fear of that happening. Your cautionary tale might come in handy some of these days for me or others on here. I very much doubt that my MS has mellowed with age!
I am sorry that you have had that bad news.
Thank you @Cavworld and @alison100 . Must admit I was wondering if this lesion is a sort of positive sign I.e that my immune system is that of a younger person / my biological age is good , but for those with MS that’s a mixed blessing. probably some over positive thinking from me : always look on the bright side of life etc
I am thinking that a new lesion might well be a result of what has been a pretty/ very anxious year of unremitting , day in day out worry about my wife’s cancer. Lots of sleepless nights etc . Not good for MS!
I see the neurologist in just under two weeks and will let everyone know about what he says about lesions in older age and also about the side effects of stronger DMTs in older age.
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Hi Hank_Dogs
I too am so sorry to hear your update and I wish you all the very best when you see your Neurologist.
It sounds like you have more than enough to contend with right now and I’m sending a big to your wife too.
Thanks in advance for updating us on here once you’re able and I know we’re all hoping you get some answers
Take care, Anita
Hi @Hank_Dogs
I’m sorry to hear you have a new lesion, that must have been a shock, especially after so many years.
I hope your appointment with your neurologist is helpful.
Can I gently suggest that you take some time to think about the newer DMTs if they are offered?
I know they can have some side effects, but many people do very well on them with minimal side effects. I guess what I am saying is to not rush into a decision.
And also that if you do decide to try a new treatment, that decision doesn’t have to be forever. It’s ok to see how it goes and you can always change your mind 
I wish you well. You’ve been so welcoming and supportive to me on this forum and it has meant a lot to me. I hope I might be able to offer a few words in return
Keep us posted (if you want to).
Alison
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Thanks youAlison @lnp8acr . I guess it was more a surprise than shock. So far I’ve not got any new symptoms but as I understand it they can develop some time after a lesion is first detected ( other than knowing that the lesion developed sometime between my Jan 2025 MRI and Jan 2026 scans I’ve no idea how old it is).
Part of me is dispassionately interested: how common is this in early 70s , was it because of the stress, anxiety and fear over my wife’s cancer, or was it just one of those things, am I becoming resistant to Avonex ( I did have a blood test a couple of years ago to look for Avonex antibodies- all was well).
I will most certainly share what I learn from my consultation and any change in DMT ( acting on the mantra that in this MS world it’s ’one for all and all for one’).
one thing I am most definitely interested in finding out is how well do 70 year plus bodies/physiologies deal with some of the newer more effective DMTs. HSCT is definitely out.
In the meantime I’m not long in from sitting outside with a hot cup of tea doing what the ancients used to do and worshiping what I think they called ‘sun’ or ‘the sun’ ( that bright thing that we haven’t seen for weeks around here)
All the best
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I’m glad to hear you are ok
There isn’t much sunshine around here but tomorrow is supposed to be brighter and I am looking forward to that!
Hello all @alison100 @animali @Cavworld @claret57 @lnp8acr @BlinkingMS
Yesterday I had My appointment with the neurologist to discuss next steps in light of the ‘one’ new lesion. He is happy to recommend to whatever internal group that I should be put on Siponomod/Mayzent which apart from reducing the chances of another lesion could all reduce inflammation levels and slow down the further development of disabilities.
He did say, however that the difference in accumulation of symptoms/ disabilities might not be that great and there is little or no information on the use of Mayzent in over 70’s. We left it that I would go away and learn more about Mayzent and it’s side effects and let him know via my MS Nurse when I see her in mid March.
Do any of you have experience of Mayzent in/Siponomod.?
I’m kind of unsure what to do, the drug does carry a few significant side effects including high blood pressure ( which could be managed) and cancer - in particular basal cell carcinoma. My wife’s endometrial cancer is still prominent in my mind! Apparently basal cell is ‘relatively’ easy to treat but it’s the word ‘cancer’ !
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@Hank_Dogs The way I see it so many of the treatments come with risks, all different but all significant. A lot of it comes down to how risk adverse you are, and your outside responsibilities.
Cancer comes up as a risk on a few drugs, I have one I take for IBD that has a risk in that direction and I personally think I’m ok with that. That having been said, I would want to know if there is “safety netting” in place to catch potential issues quickly, so this would be what I would be checking with the MS nurse.
Again with the heart issues, I think it said at the beginning of the treatment it could lower the pressure if I read that right?? Again, how will this be monitored along with potential high blood pressure?
With regards to your wife’s cancer journey, I can understand your caution. You need to look at both what would happen if MS worsened (if indeed it would) if you stayed on current treatment, and also if you tried the new drug, if side effects occured how you could both manage it.
I personally don’t think any decisions made either to go ahead or don’t will be wrong, but just having the facts, the right monitoring in place either way you decide.
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It is usually a good plan to start by shooting the shark that is nearest your boat. In your case, I would say the shark nearest the boat is inadequately managed MS. Other sharks may be circling further off – high blood pressure or other even more sinister side effects - but they’re a different order of problem, and can be left for another day.
Obviously this is my purely personal view of what I might do in your shoes, but I’m not in your shoes.
Good luck with whatever you decide.
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Hi Hank dogs, I think you have to way up your priorities. All medications come with side effects, risks and it’s about whether you choose to take them or not and bear in mind we all react differently to these medications. Personally I had to change from kesimpta to ocrevus because of infections after every injection and psoriasis. I hope you manage to decide how to proceed.
Hi @Hank_Dogs
Thanks for updating us, I was wondering how you were getting on. I am glad you have been offered some treatment. The MS Selfie website has some very good information cards on all the different treatments and their risks etc so that might be a good place to start. It’s written by an MS specialist neurologist who worked in the NHS, though I think he may have retired now.
The Ms Society and MS Trust also have information about treatments on their websites too.
I think when it comes to weighing up risks, it’s a very personal decision, as others have said.
I liked @animali ‘s shark analogy and that the way I’d tend to go too, but we all have different things to consider so only you know what’s best for you. I think the poster who mentioned safety netting was very wise too.
I think there are some posts on the forum about the different drugs (Siponimod certainly, I’m not sure about the other other), so you might find out a bit about other people’s experiences that way too.
I hope you come to a conclusion you feel comfortable enough with.
Wishing you well,
Alison
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Hi Hank_Dogs
As you know, it’s purely you (following discussion with your wife too I’d say), who can make this decision and I’m sure others, like me, value your input on this forum, all the factual guidance and pointers you give us are truly appreciated. With this in mind, i am certain you will do your research and make an informed decision based on that and what you feel is right for YOU!
I’m sending you and your good lady my very best wishes, please keep us updated as we’re all rooting for you both.
Anita xx
Thanks @Cavworld @BlinkingMS @animali @alison100 @lnp8acr @claret57
I have a couple of weeks or more to decide so I’m just going to let things turn over in my mind, sleep on it etc. My wife was a nurse so, in addition to being my wife her nurse’s knowledge will help inform my thinking.
In part I’m thinking ‘ok, 1 new lesion in 19 years, chances are that at 72 it’s very likely that I will have died of other causes well within the next 19 years! On the other hand , was that one lesion the first of more to follow in the next year or more.
Disability is increasing but I’m still walking etc etc etc. ‘. One thing I do need to learn more about is the extent to which the drug might slow down progression of disabilities independent of relapses . As the advert says ‘every bit helps’.
Do you know of any good fortune tellers?
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Thanks so much for setting out your dilemma here. I think it may be increasingly common as we age with MS, that we are presented with this kind of thing.
It’s such a shame that older people are so often excluded from clinical trials.
My instinct is to be a bit careful with reading about side effects. The list of them always makes it sound like it’s what “will” happen, whereas they are mostly things that “might” happen - you want to know the probability.
As regards the more worrisome side effects, can you do anything to prevent them? If they happen, can they be treated? Would coming off the drug be sufficient to reverse?
On siponimod, have you read the EXPAND trial results? Must be available online somewhere. Hardly a personalised response to your question, but that would by my fortune-teller of choice.
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