I realised with shock last week that you have to be under a certain age to be treated with a cure for MS because 65 and over means our immune systems have weakened and the reset of our immune system won’t work. So it seems we not only have to fight the post code lottery, but now if we are over 65 we will be refused treatment for any form of MS.
That is not only cruel, it is inhuman and surely against our human rights. I have suffered for over thirty years now. Daily daring to believe I should the NHS to support me. But since I turned 50 my care changed and now I am 65 it’s almost nil. My twice yearly visits to see my consultant have been cancelled twice, the second time with no update on any future appointment. I was told my Copaxone will soon be stopped because at 65 this treatment does not work, I also then will never see my consultant again. It’s only 10 minutes twice a year, how is that carding anyway? I feel I have been left to deteriorate and die like an unloved pet thrown out on the rubbish dump. How is this legal.
It seems If ever there is a cure for MS of any kind, I simply won’t be treated or cured. My family are long lived, so I could suffer for another 30 torturous years. In spite of MS I am not in a wheel chair, I worked full time for more than 30 years and now I am the sole carer for my parents in the nineties and my husband with Altzhiemers. How in Gods name can I achieve this without hope of being cured?
I am left feeling absolutely terrified and totally alone.
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Good morning @bretonsperet
The first time that I heard of this part of the process it did strike me as being cruel but, I suppose I kind of understand it a little now - I won’t pretend to know the ins and outs of why. There is more information on it somewhere on here.
I’m sure that you’ll know there is no cure - we’re all stuck with it for the long haul. Some of the disease modifying drugs used to manage our conditions could be quite damaging to an ageing system so, rather than being refused care, it sounds like you’ve been moved into a new phase of care. They’ll still want to see you if your symptoms worsen. That’ll probably be when you’ll have a new chat, an MRI and assessment to monitor any new development. You may be treated with steroids, muscle relaxants and painkillers as required if the need arrises. Until then, it’s worth working on self care with things like diet, mild exercise and good rest
Someone on here that knows more and can word it better will be along to give you a better reply soon.
Take care mate x
Jon.
Hello @bretonsperet , I feel for you, I really do.
Sorry if this is a bit matter of fact but there is no sign nor talk of a cure for MS coming along and I m sure that for many with MS any cure will be available years and years after we are dead. Not much consolation but with the possible exception of much younger people, we are all in the same boat here. Similarly we will probably all get to the age where treatment with Disease Modifying Drugs is seen as too risky for our older creaking physiologies. Hmm - don’t get old and as Forrest Gump found out ‘s,t happens’
on the sort of plus side, the Drugs mainly serve to reduce the number of relapses and with age comes weaker immune systems , fewer relapses and theoretically a decrease in the need for the Drugs .
Having said the above I am 72 and still being treated with Avonex ( a weekly self injection). Also, after 19 years of no new lesions, my latest annual MRI showed a new one. I think that if I was in your situation I would be taking my and other similar examples of new lesions in older age and asking for justification of any discontinuation of the Copaxone.
Just sharing experiences: my parents died 5 and 10 years ago and although we lived 100s of miles apart I would go and stay with them to provide support and help in their late 80s and mid 90s. It was hard and ultimately sad work and I do sympathise with you on that.
This last year and for the foreseeable future my biggest fear, anxiety and difficulty has been my wife’s cancer diagnosis and treatment. For the time being the treatment seems to have put things in remission but her next scan in a couple of weeks will tell more. There will be further scans every 4 months and after a year and all being well the intervals will be increased to every 6 months .
I am thinking that you might feel the same : there is a dark cloud constantly floating nearby. I haven’t a clue what I would do if that cloud descended.
More than happy to share including experiences, difficulties of MS in later years and anxieties etc of having loved with their own serious/life changing conditions.
Not that it’s of any particular relevance but am I right in thinking that along with Avonex and 1-2 other drugs Copaxone was one of the first drugs to be made available?
I think they were one of the first, I was treated from the 1990s after some fight to be accepted on trial basis and I’m still on Copaxone currently, although my consultant told me this will be stopped due to my age soon. Our immune systems deteriorate over time of course. These don’t stop the relapses or disability, but they do slow down MS progress, which was the case for me, so I am grateful for that support, then I was 34 years old, now I am 65 and still mobile. So I am sure they did help me.
I am so sorry to read about your pain and your wife’s fight with cancer. When we love someone you can’t find the words and have to carry so much secretly, so as not to hurt them, even if you are falling apart inside, you can’t show it. I am carer for my husband with Alzheimer’s, which makes us both very vulnerable now.
I understand the consultants feelings when he/she can offer nothing to help patients ultimately. They must get so disheartened.
But I wish the news would not tell people of new research which even though very hopeful is still probably decades away. Wait until they can say, we can treat MS with very good or even 100% outcome right now. Of course they can’t.
My consultant told me, due to my age, 65, if one were available right now, I’d be too old now. They take the oath that they must do no harm, so it’s a balancing act as not every one will react the same to any one treatment. Age is obviously a factor.
My mother almost 90 was still treated for breast cancer. It was hard but she’s still with us thank God. So why would my consultant say at 65, he would not put me forward for MS treatment, if there were one in the next five or ten years?
I hope my message finds you strong and enjoying the sunshine today.
Hi thank you for your reply. I was referring to the news on TV which spoke of a major breakthrough for MS sufferers. It could be a cure, it could even mean your body can reverse delimitation of nerve linings. For I think it said all types of MS. It said our wait might not be much longer. It’s still under trials as I read on the internet. I was quoting my consultant who warned me once I reach 60-65 I’d be unlikely to receive a cure treatment due my advanced years and the fact that our immune systems are not so strong as we age. He also told me my Copaxone will be stopped soon as it has been proved not to work well enough at my age. He said, at least he won’t need to see me again, so I won’t need to go to my yearly appointments. That means I won’t be monitored any more. My GP knows very little about MS as we know many GPs don’t. So I have always known there is currently NO cure at all for any kind of MS, and to prevent relapses, only slow the progress.
It seems following that brief news report the medical profession are excited to have found a possible cure which is now under trial of course.
I was remembering what my consultant told me, that at my age, he’d be unlikely to refer me for the treatment. Because of a weaker immune system. He took away any hope of anything good for my future in one felled swoop, even IF a cure or real control for MS were to be rolled out to patients in the UK. According to him, I am already too old.
I’m sorry to sound rather ignorant about my MS and angry at my consultant who is part of a body of MS consultants deciding upon the care of individual patients like myself. They decide what my future chances are to fight my MS, so they control my life in that respect I’d suppose. But only one consultant sees me, 10 mins twice a year so he does not know me or my life in reality. I’m still strong am very rarely ill and almost never go to see my GP. In spite of my MS I care for three other people. He shouldn’t have said what he did causing me even more pain.
If the new treatment for MS which was on the news is still to be many years away yet, then the specialists in the labs should not have put it on the news yet.
apologies for not explaining myself better. I know there is NO cure at all and no real control. After that news reports, I was made to hope there will be very soon.
Kind Regards
To be honest I think your consultant is being ultra cautious and nervous. I now can’t remember if it was on this Forum, the MS Trust Facebook pages or MS UK facebook pages but last week there was a post from a guy of 70 saying hello, he has just been diagnosed and is soon starting treatment on a DMT. At 70!
I’ve no idea if Copaxone is or isnt effective in older age but there are now many and more effective alternatives for you to look at and to suggest to your Neurologist. With some consultants you have to be your own and determined advocate!
I rarely see my neurologist which is fine and makes sense. He deals with the more complex and new cases and the Nurses deal with ongoing monitoring and dealing with the effect of MS and referrals to e.g physios etc. My 6 month appointments are always with one of the MS Nurses and my only appointment with the Neurologist in the last 5 years or more was after a new lesion was found on last years MRI Scan. I saw him to discuss a possible treatment for active secondary progressive MS . In the event, the results of various blood tests and an ECG suggested that the drug ( Siponomod) was too risky for me. Oh well - even at best it wouldn’t have made a massive difference to my MS.
P.S. when it comes to anything to do with MS and potential new treatments I stick to the websites of MS Society and MS Trust and my other go to source of informed comment and discussion is Professor Gavin Giovanonni- recently partly retired neurologist at one of the University hospitals in London (definitely worth looking up for his MS Selfie Site )
Also if you were referring to CAR T cell therapy then have a look under news and research on the Society’s website.