curious, older msers discriminated against?

For years Ive suspected older msers are being overlooked when it comes to DMD’s and therefore presumably any new treatments which follow. What has been your experience? bren x

I would certainly hope that is not the case Bren. I think if there was any evidanace of that then you have grounds to make a complaint to the health authority. Any drug within scope of somebodies illness should be open and available regardless of age. I know I am not on any DMD way the moment due to cost but when I see my neuro next I will be enquiring again. It will be interesting to see other replys to this. Strudders

Depends what you mean by “older”? At 45, I’m not in the first flush of youth. But I’ve not experienced any problem so far. Certainly none I considered age-related. I was unhesitatingly offered DMDs - I say “unhesitatingly” - I didn’t even get invited to the assessment to confirm I was eligible until six months after diagnosis! I was eligible, and there was no controversy about that. But I elected not to have them, and there was no controversy about that, either. I’m confident I could have had them if I wanted (and still could, if I changed my mind), so I certainly don’t think I’ve faced any discrimination on grounds of age. I’ve never had an MS nurse, and frankly not interested enough to push for one, but I don’t think that’s an age thing either. I think administration’s a bit sloppy, and you don’t automatically seem to be referred to a nurse - although there’s a widespread assumption amongst other health professionals that I already have one! It may be partly because I transferred from BUPA to NHS, so I wonder if I bypassed some normal part of the induction process. Tina

Hi Bren, I’m glad you raised this issue because I do believe a person’s age has a lot to do with what treatment they are offered, not only with respect to MS and DMDs but on the NHS in general I’m afraid. I am not on any DMDs at present but have an appointment with my neuro in two weeks to discuss drug therapy after a year of back to back relapses so I will be able to report more after that. What I can say from previous personal experience is that I was turned down to go on the Campath trial and that was definately because of my age at the time (53) and I was told that was the reason. I was very angry and demoralised about that and eventually gave up trying and carried on with no treatment at all but now I know I must do something positive and go down the drugs path, luckily I have a very good neuro who I think will support me all he can. I don’t think age should be a factor at all, I worked for 40 years and paid into the NHS and now that I need its support I expect to get something back and I shall argue this point with my PCT, and take it further if I have to. I can be a right stroppy mare at times. :mrgreen:

hi, I was 53 when i was first diagnosed, wen i started having walking problems and back to back attacks i was told there was nothing that could be done by the neuro and dismissed out of hand, luckily i have a very good nurse now and over the last 15 months have been put on baclofen and amitriptylene, which helped, i can’t take the amitritylene any more because i get severe heart burn so have been put on clonazepam, i haven’t seen the neuro since feb 2010 and it’s unlikely i’ll see him anytime soon, if ever again. I have never been offered any thing that might slow th attacks and to be honest i think the neuro isn’t interested because of my age… thank god for the nurse. p.s i’m diagnosed as r&r

I dunno - I was 51 when I was diagnosed, and even before the full results were in my neuro had raised the concept of DMD and had me refered for them asap after the results were all in. It could be something to do with the postcode lottery or the prejudices of the individual neuro. Clare

I’m not sure, my husband started Avonex in his fifties. However I do wonder about other treatment like physio, which his is not able to have, apart from a short course, on the NHS.

Ask Roger Andrews - he’s on Rebif and was diagnosed fairly recently and he’s over 50 - I’ll leave it to him to tell you how old he is. Most older people tend to be put into SPMS immediately, which I’m not sure if is accurate or not. I guess if you have relapses and can still walk and aren’t feeling as though you are worse each day, then you are probably RRMS and therefore eligible for the DMDs. x

monkey1666 wrote:

hi, I was 53 when i was first diagnosed, wen i started having walking problems and back to back attacks i was told there was nothing that could be done by the neuro and dismissed out of hand, luckily i have a very good nurse now and over the last 15 months have been put on baclofen and amitriptylene, which helped, i can’t take the amitritylene any more because i get severe heart burn so have been put on clonazepam, i haven’t seen the neuro since feb 2010 and it’s unlikely i’ll see him anytime soon, if ever again. I have never been offered any thing that might slow th attacks and to be honest i think the neuro isn’t interested because of my age… thank god for the nurse. p.s i’m diagnosed as r&r

Please don’t stand for this. There is nothing in the DMDs eligibility criteria about age except to say that patients should be over 18. There is about how far you can walk though - you mention walking problems - that might have been the reason? These are the criteria: People with relapsing-remitting MS should be offered interferon beta (any type) or Copaxone provided that the following four conditions are met: • can walk 100 metres or more without assistance • have had at least two clinically significant relapses in the past two years • are aged 18 years or older • do not have contraindications (see specific summary of product characteristics (SPC) for details). “Contraindications” are about meds / other medical conditions. Something that a lot of people don’t know - not all neuros are allowed to prescribe DMDs. And the ones who aren’t are not very good at mentioning this to their patients! Perhaps if you got a referral to an MS specialist who can definitely prescribe, you might have more luck? Karen x

Hi Brenda, I was on DMD’s for many years and I often asked myself the question as to how my consultant knew they were working ? or not ?.. I didn’t know myself. When I suffered from necrosis of the injection sites I was taken off DMD’s and I was never put back on them. When I ask my consultant about “Treatment” I get rather blank answers with just the statement that they were not for me or they didn’t work. So what do I extract from that ? I don’t really know is the answer. I could think that all DMD’s don’t work, or I could think that they don’t work for my type of MS ? I could also thing that as I decline I am still comparatively better of than many but may never get treatment because my decline is not as bad as younger people. Sorry I can’t give you a definitive answer to your question but I suggest we meet up for a cheese party before it’s to late. Mr Mouse

YAY! Mr Mouse - you’re back :smiley: Kxx

Thanks all for your replies. Just wondered if others thought there was some discrimination. Ive heard of some msers begging for access to DMD’s and others who would have liked the option but never given the chance. Equally, those who get them automatically with diagnosis of RRMS, mostly of younger age than those Ive described. By the way I have RRMS, was diagnosed at age 49 and have never been offered them yet have suffered equally disabling symptoms as a lot of msers on here. bren x

Bren, if you can still walk and are having relapses, then you should be eligible. As Karen wrote, it’s a good idea to make sure that your neuro is permitted to prescribe DMDs. Not all neuros are equal, amazing as it would seem. This seems unfair and if you have the courage to, do ask and stick to your guns. It’s difficult, as they hold all the power, but you shouldn’t be fobbed off. I really hope you get some better treatment soon, very best wishes, K xxx

Hi Bren I have a friend who was put on Betaferon when she was around 60 and has only just come off of it at 71 years. I don’t know if that’s a record. Her MS seems to have affected her eyesight more than mine. She thinks it’s a hoot that I walk slower than her and I am 55. She can still see ok but one eye only sees black and white apparently. Wendy x

Corkie wrote:

Hi Bren I have a friend who was put on Betaferon when she was around 60 and has only just come off of it at 71 years. I don’t know if that’s a record. Her MS seems to have affected her eyesight more than mine. She thinks it’s a hoot that I walk slower than her and I am 55. She can still see ok but one eye only sees black and white apparently. Wendy x

Thank you for that!!! Before my ON kicked in, I used to have periods when I could only see in black and White… We put it down to stress and working 16 hour days during the lead up to opening of a large project I was involved in. So I wonder if that was another “sign” of what was coming… Interesting… Strudders

they are, at 57 i’ve had my neuro appointment cancelled, i get pregab, copaxone, baclofen and modafinal as an after thought, i’m dx’d as rrms but not bqelieved when i tell the nhs i’m having an attack as for DMDs? never gonna happen, i was told by the neuro there was nothing he could do for me the second time he saw me (2 months after DX) and didn’t see a neuro for over 2 years and only then by the refusal of my MS nurse to give in. So now I look forward to being catheterised, totally wheelchair bound hoisted in and out of bed and all the other luxuries that come with next to no treatment… NHS= No Hope Sucker as far as I’m concerned

Now I was offered my choice of DMDs at the age of 73 (that’s last year) and have had both an FES supplied this year, and a course with a proper neurophysiotherapist this year (that’s at 74).

Just like Clare, I think this could be another case of post-code lottery (and I could not possibly comment about the prejudices of an individual Neuro - I now have a “new” one and see them for the first time next January, at age 75).

Geoff

Hi

Totaly agree older people and progressive types are always at the back of the que.

I was diagnosed at 49 and was told at the time ( sorry can’t remember who ) that I probably wouldn’t be considered for DMDs because they wern’t given to anybody age 50.

I have SPMS so didn’t expect them however a couple of years after DX I was sent for acessment for DMD’s because it was thought I was having relapses.

Guess what I didn’t get them ( after doing the dreaded walk, twice ),

The excuse it wasn’t a relapse it was site activity, somthing I had never heard of,

So yes I have always believed that.

Ronin

Hi bren, see most of your respondents have had DMDs. In Halifax, the neuros cant prescribe them. Anyone considered for them has to go to Leeds, I believe.

If you feel you`ve been overlooked for DMDs, I think you should ask your neuro why this is so.

luv Pollx

The issue was raised on PPMS board recently. Because we are generally in older age group we wondered if that’s why less research has been done on PPMS.

There is a lot of research going on at moment, but I think in the past there has been less research and I think it might be because we tend to be older.

Pat x