Hi Bren, you could have something here, I was DX at 47yrs, within the first 12mths my MS nurse referred me to a Neurologist who would prescribe DMD’s because she felt that I qualified, went to see him went through everything, back and forth for 2 appt, told didn’t qualify,then 6mths later told SPMS, my nurse was shocked when he didn’t put me on them, and now I wonder if things would have progressed as fast as they did, don’t get me wrong I still do really well, but maybe I could be doing better, so maybe age does come into it. Jean x
Hi Bren,
I wonder if your problem is not so much age as Leeds, even though Poll believes people from Halifax come to Leeds for DMDs
At the Otley MS chat group last month we discussed drugs and nobody there had been prescibed or knew anyone who had. Clearly somebody in Leeds must be getting access but it’s not us.
Jane
It seems to be more a postcode lottery. I was dx aged 30 with RRMS,16 years ago. Moved house and never saw a neuro until 7 years later when I had first significant relapse after dx. DMDs weren’t offered to me then but after another 2 relapses my MS nurse mentioned them to me. By now I was 44. I took 6 months to make up my mind to try them and started on rebif aged 45. Fifteen months later I am now on copaxone- couldn’t tolerate rebif.
However my aunt who is now 81 and was dx with MS 10 years ago (prob SPMS/PPMS although never been confirmed by neuro as to what MS she has) but is still mobile has never been offered any DMD.
I’m 56, was diagnosed at 45, offered DMDs immediately, had Rebif for 8 years and now in 3rd year of Tysabri. Nobody has ever mentioned my age and I’m astounded to hear that it seems to matter in some areas. It’ll be a funding issue - the NHS needs to sort it all out.
Wow, wonderful replies, there does seem to be a postcode lottery going on, and perhaps some age discrimination. Its such a shame older msers dont get a look in and Ive a feeling no matter what prospective new cure is around the corner, maybe nobody will get a chance because of the parmacutical companies overpricing their magic pills?
I feel for those wanting treatment no matter what, as their ms is so progressive anything is worth a shot, but alas they dont get anything. How I wish I were a milliionaire, I would love to give the opportunity to all, so until that day, lets hope some other nice millionaire gives us all a fair crack at the whip in curing this baskit dead!
Note: I started this topic way back in 2011 - wonder who ressurected it? Glad you did whoever. Always good to talk.
bren
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I was diagnosed in 2008 aged 61 and I was put on DMDs , Rebif, a few months later at age 62. It has kept me well ( perhaps also because of LDN ) with no relapses since! I fulfilled the criteria - could walk ok and had had 2 relapses within the last 2 years. I remember my Neuro saying I fulfilled the criteria so therefore no reason not to prescribe. There is evidence to suggest the sooner you start on them the better. I am nearly 65 now so no age discrimination there. I live in Gloucestershire. Roger.
My MS nurse told me it was EITHER Rebif OR LDN, so I am surprised you take both - however whatever works for you!
(she said this was included on the advice from the MS about LDN)
Hi - Sorry I haven’t read all of the posts. But am shocked by some that I have read. There are very clear NICE guidelines for the prescription of DMDs which I believe consultants have to follow. If they don’t complain - Karen gave me advice with my problem - separate issue - to get my MP involved. So perhaps this might help for those being refused DMDs when there is clear evidence that they are needed. The NHS cannot age discriminate - I’m sure there’s some policy on this but can’t remember it’s name Rebif and LDN - I had excellent advice from several on this forum including whammel and Karen - thankyou and sorry if i have missed anyone - that it was safe to take together. My Neuro said it wasn’t safe! My second opinion neuro said that it was safe! First neuro is the one that says I haven’t relapsed when I’ve emailed him clear guidelines from NICE that I meet saying that I have relapsed! The medical system is a mine field - I’m just trying to stop treading on them! Hugs and support Min xx
in
Dead right, Min. It is in the NHS Constitution - see pages 18-19; p18 actually says “age” and page 19 omits the word.
However, when you look at the detail in the appendix to the Constitution, on page 121 it actually says age again, with a note that he Equality Bill will address age discrimination directly. It is only when you look at the Equality Bill itself that the weasel wording starts.
Geoff
Taking both Rebif and LDN is fine. Many people do. I took both together for about 3 years and felt great, but the LDN doesn’t do anything now. It’s a shame, but it just worked for that time and then did nothing. The Rebif is still working after 12 years for me. The information that it’s not possible to take both together is outdated. They both work in similar ways - to strengthen the blood/brain barrier. Check out the info at the LDN Trust and they will reassure you.
I’m with you on this one - but I’m a no hoper wheelchair catheter user already - never had any help from the NHS and when I asked about DMDs I got thrown off the neuros list and was placed on another one who then confirmed I definitely has MS - lol tell me something I don’t know as I’ve had it for decades - relasing and remitting…
Anyway because I’ve been denied DMDs I’ve progressed and am now classed as Secondary - funny that as they said I was secodary when I could walk and when I had the required number of relapses within the year.
So secondary equates to no hopers I guess and no hopers don’t get treatment - so I’m definitely with you on this one.
I HATE MS, Mary
Yes mary, there does seem to be some discrimi nation or perhaps neuros who wont prescribe no matter what. There are msers who are convinced they have had the required number of relapses and others who cannot get their neuro to state they are actual relapses, leaving them with no evidence, yet on mri they are shown to have more lesions?
I too hate ms, but did think there would be an offer of some treatment for us all. Alas even with new modern meds there doesnt seem any hope either, we are either over the hill or dont have the right type for treatment - or have the right sort just cant get hold of them cos nobody is listening.
Very interesting debate. I was told by ms nurse there is a cut off age although lots are loathed to mention such fact, seems in some areas there is no age barrier, lottery perhaps?
Plod on Mary but dont be fooled into thinking all msers are to be catered for, because we know they are not.
bren
x