Forum

How long for DMD's?

Hi everyone, just a quick question that’s been puzzling me for days. I have read a lot of posts lately from people who have been dx and started dmd’s within a few weeks. I was dx on the 1st of Feb and still haven’t even been told if I’m eligible or not. Is this normal? Also seems there is quite a long wait between choosing a treatment and starting it, so im starting to think if I get on one before the years out il be lucky! Just seems to be taking forever or am I just being impatient? Thanks Laura x

Just read my post back, and actually yes I am being impatient! I would just like to know if I’m eligible, so that all this research I have done won’t have been in vain…just the limbo that’s hard hey? But I guess we have all been there. X

I was diagnosed 2004 and I am due to start soon. However I think there is a criteria for them. As I’ve had two relapses, one leaving damage its now thought this is the next move. However I have noticed some people start them straight away regardless of criteria so think its a postcode lottery. X x x

Yes, the Postcode lottery seems to be a big factor, there is no rhyme or reason to it though :frowning: I am on my 3rd relapse in 11 months. The first one was all sensory though, so not sure if it is counted? I have been left with some damage too, so am really keen to get started. Would just like the powers that be to let me in on the situation! Hope all goes well for you on your treatment x

I was diagnosed in March 2012… My neuro told me that has I had only one clinically recognised relapse I was not eligible for dmd’s. I was told that unless I relapsed, he would see me in 12 months time…and that the MS nurses would contact me. Three weeks later before hearing from any MS nurses I went into relapse…so contacted my GP then after a course of oral steroids I heard from the MS. Nurses it was now June. After another appointment in July, they spent the summer speaking to my GP to confirm my April relapse. I then recieved a letter saying I would be considered for DMD’s. Whilst waiting I went into my worst relapse…they then decided to pull their fingers out after much support from my GP, I eventually started Tysabri in February 2013. So if you’re still reading my wait was long and drawn out…I believe that in Wales and Scotland they’ll get you started on treatment as soon as you’re diagnosed.

Wow I thought I had it bad! Glad you are finally getting the treatment you need. Good that you have a supportive Gp, my nurse has been amazing…shame the neuros arnt always as helpful! X

Laura it sounds like even with eligibility criteria you may he eligible …my Neuro basically said another relapse is likely to cause more damage and its now time to start meds to start the DMDs. Im hoping to start mid may. If I was you I’d chase things up esp if you have a good nurse . Good luck hun x x

i started on copaxone 3 months after diagnosis.

i had a bad relapse after my MRI and a 3 day course of IV steroids.

so maybe that was why i started my DMD so soon.

carole x

I think the eligibility criteria are different depending on which dmds you are talking about. For Tysabri, it’s three disabling relapses in two years and (or?) active lesions on an MRI. Tysabri is the most effective dmd, with average 66% reduction in relapse rate and 66% reduction in accumulated disability, while those figures are more like 33% for the interferons (there’s a Rebif which has had a trial where the reduction in relapses was 45%). Tysabri is also easier to take than the interferon type dmds, one infusion a month rather than injections daily or weekly. It also has possible disabling or deadly side effects which the interferon type drugs don’t have. In some places, I think they want to try you on the interferons before they’ll let you go on Tysabri. Not the case everywhere - I went straight on to Tysabri after seeing doctors in London and Coventry.

I went straight onto DMDs just a few months after diagnosis and it was my decision to delay it until I was on leave from work so I could get the worst of any side effects out of the way at that time.

I believe I qualified instantly because I had had two significant relapses (ie not sensory) within four months which had led to my diagnosis. Maybe you should ask what the criteria is in your area and when you are likely to be offered DMDs?

Tracey x

I was also wondering the same thing. I wondered why I will be given DMD’s tomorrow after having one relapse late Feb, (I thought the criteria was 2 relapses). I don’t know if it was a bad one or not as I have nothing to compare it too, but I couldn’t use one side of my body - head to toe (I was unable to move). I was diagnosed in a week and had to stay in hosptial for steriod IV.

Thanks everyone. My nurse is assuming my neuro will talk about it next time I see him which was meant to be in May, but has been moved back to mid June, don’t know why? Probably to see if I explode beforehand in frustration! Ok probably not. I really don’t understand a lot of the criteria. I know that I would have to travel into London if I were to be offered tysbrai (unlikley), but there is a hospital about 5 miles away in the same county, that offers it as a first line treatment?? I shall just have to wait and see, it will happen.x

I think you are definitely eligible for DMDs vs the NICE criteria Laura, but I don’t know if your PCT have any extra interpretations of the rules which might change that. Can’t see how mind you. It will speed things up if you have already chosen what one you want when you see the neuro. So frustrating to have to wait though! Karen x

I’m feeling a bit guilty reading these posts!!..my neurologist put me on dmds after my first attack(which was quite disabling) as he figured I have lesions on both my brain and spine I am highly likely to suffer future attacks!..so I guess I am very very lucky to be in a position of being prescribed them!..it all happened fairly quickly first attack April 2012 and started avonex sept…it does looks as though it depends where you life which is not right everybody should be entitled to the same treatment regardless!!..I’m in Scotland by the way…Emma x

Don’t feel guilty Emma! It’s great that you got started so quickly, the way I understand it the sooner you start the more effective they are. Before my dx I always heard words like Postcode lottery banded about, didn’t mean much to me though if I’m honest…now post dx I’m outraged!! X

Hi Laura I know what you mean if it doesn’t affect you you don’t pay much attention to it!..hopefully you’ll get started on treatment soon…I’ve been lucky as I’ve not suffered the flu like symtoms either!..was dreading that its enough to cope with a diagnoses without all the treatment desicions too…bit of an emotional roller coaster all this!..Emma x