Forum

when DMD's?

Hiya,

Can anyone tell me the following please?

  1. When, after diagnosis; should we be offered DMD’s?

  2. Is there a correct time to start DMD’s? As in at the start, middle or near the end of the illness?

  3. What are the criteria that the nhs asks for to allow us to start on DMD’s?

  4. What exactly do DMD’s do?

Laymans terms please - I’m quite thick lol

Thanks in Advance

TC

Anna x

Hi

My understanding is it’s better to get on DMDs as soon as possible. Betaferon you can be offered after diagnosis and after a single episode but I’m not sure what the official criteria is for the others. Someone will be along I’m sure to confirm that.

DMDs all do much the same thing which is reduce the frequency and severity of future relapses. They won’t affect anything that has already happened, they’re not a treatment in that respect, Relapses can take you off your feet though so if you can reduce or prevent even one, it’s worth the effort.

Hi Anna

From my understanding to be perscribed DMD’s you need to have 2 diagnosed relapses within 2 years, The point of DMD’s is to slow down the relapses hance slow down the damage done and help your quality of life.

The DMD’s do nothing to help or lessen a relapse , they hopefully DELAY or SLOW DOWN your relapses

I would point out that DMD’s have side effects. (which can be bad)

Its all based on percentages from my understanding, they think it works so it is a treatment.

If you progress to the progressive form of MS your treatment stopps as its not worked and there is nothing they can perscribe for you which hopefully will never happen.

Daniel

I would just like to say it doesn’t necessarily have to be “diagnosed” relapses. I was eligible based on only one that was witnessed, plus self-reported previous history - which hadn’t been verified by anyone, because I didn’t know I had MS, so hadn’t been to the doctor.

They asked whether I’d ever had anything similar before, and I remembered that I had, and was able to say roughly when. They seemed to accept that at face value.

Tina

Thanks everyone for your replies again.

Youv’e given me lots to think about.

One question I am left with is, Does taking a DMD when your MS isn’t too bad at moment. As in I have RRMS and have one relapse that my consultant diagnosed so far.

So back to the question then, Does taking a DMD whilst everything relatively ok, make the MS worse?

As in, if you start taking them before things get bad then do they not work as good when things get really bad?

Does your body get immune to them?

Just really confused and frightened over meds. should I be taking some sort of medication to try and starve off the inevitable now?

Or is it wasting peoples times and resources?

Thanks in advance again for any replies

TC

Anna x

Anna,

It has nothing to do with treating your present condition. It is unlikely to make that either better or worse. It is all about trying to reduce future attacks.

Have you been told by your neuro that DMDs are a possibility?

Because from what you’ve said about only having had one relapse, it seems unlikely you’d be eligible anyway - or have I misunderstood?

DMDs are only likely to be offered if you’ve had, or do have in future, two relapses within 24 months. If that scenario doesn’t arise, it may not be a decision you ever have to make.

If your neuro hasn’t talked to you about it, it’s probably because it isn’t an option at the moment. However, if you want to be absolutely sure, you should query whether you are eligible for DMDs - and if not, why not.

Incidentally, I’m not trying to push you towards DMDs, as I’ve chosen not to have them. But if you’re in doubt whether you qualify, you need to get that cleared up first, otherwise there’s no decision to make!

Tina

x

HIYA,

Sorry it is probable the way that I explain things lol!

I have only had 1 relapse since I was diagnosed that the consultant diagnosed. It was actually that particular relapse that made his decision to confirm the MS.

I am currently RRMS, fingers crossed!

I didn’t know over the years when I have had similar symptoms to the relapse, that I had MS. So I find it difficult to say if I have had any more or not previously. I believe that there could have been a few times where I was possibly relapsing now. However, my life has always been moving pretty fast, so I always put things down to copious amounts of stress and the like.

I guess I am just worried that there might be drugs out there that would help me not to get any worse but it seems like you have to get a little worse before you become eligable for them?

I just find this ludricous really and frustrating as I can not afford to try things such as LDN and the like and in the meantime I am just waiting for things to get worse with the MS, for drugs that I may be too ill for at the time when I relapse again.

Just seems so unfair

thnx Anna x

Hi Anna,

Last one for tonight - then I really must go to bed. :wink:

So presumably you’d had at least one earlier episode, which led MS to be suspected, then you had one which enabled it to be confirmed?

If your neuro hasn’t already discussed DMDs with you, it’s probably because either your episodes (relapses) haven’t been frequent enough (not two in two years), OR, possibly, because he doesn’t deem them severe enough. The criteria do talk about “clinically significant relapses”, rather than just “relapses”, so I’m not sure how bad one has to be, before it’s deemed “clinically significant”. Almost certainly anything disabling would be, but if it was minor sensory stuff, that didn’t last very long, I guess that might not be considered “significant”.

Either way, it’s really your neuro you should be talking to, about whether you fulfil the criteria. Because it hasn’t been mentioned yet (at least, I don’t think so?), I’m guessing the answer is “No”. But to put your mind at rest it hasn’t just been overlooked, I think you should ask the question.

Do make sure he’s aware of any earlier episodes you now think could have been relapses, and try to recall dates, if possible (at least roughly).

I was asked to put together quite a detailed timeline of everything that had happened, and I included stuff I wasn’t quite sure about, too. So I had things like: “Hurt leg??” and “Mystery bug??” - all stuff that looked, with hindsight, as if it might have been a relapse.

Tina

x

Dear Anna

I can’t add to advice already offered about starting DMDs but I was on Avonex for about five years and at the end of that period my neurologist told me that I could stop taking it if I liked, it had reached its eficiency and would remain in my system for quite a while. I don’t know what was fact and what was cost effectiveness for NHS but I was eager to stop anyway as that Avonex needle had tortured me every Friday for those years.

Nowadays I am winging it and manage things as well as I can by diet and excercise. I am on a strict gluten free diet with low fat and sugar, and last year I treated myself to a rowing machine, an excercise bike and some other thing that I call a fat boy machine, but it is for working my abs.

This combination is working well for me at the moment, probably better (for me) than DMD therapy and I do feel better than I did then.

Good luck ahead

Mark