Forum

DMDS

Just quick question…I’ve noticed looking through various posts that some people seem to go on DMDs straight after diagnosis or pretty soon whereas others have to fulfil a criteria. Am I reading this wrong and if this is the case why is this? What I am trying to work out is whether really most people with RR M.S should be offered the medication on diagnosis? Not that I think I needed it until now and still wander if i do (or in denial or cos I’m a scardy cat when it comes to needles). It was just something I was wondering! X

Hello,

It does seem that some neuro’s will hold off until they are sure its ms. My neuro diagnosed me a little early with ms so i could start dmd’s. But before i started i had another relapse and was then sure i had ms.

I always thought we were given dmd’s on diagnosis. But some say they didn’t.

…on needles i was very shakey when having an injection, but now i have done it i do seem to be fine with them. Its one of them things we do get used to. I got to practice loads with the ms nurse which did help a great deal.

Must admit it was a very hard choice between which dmd to start with. I couldnot believe their were no pill form of the drugs, but bg-12 may be about in a year or two. A pill form of betaferon, will be good if we are ofered it.

Any way goodluck, its a hard choice but we all manage.

Darren

Thanks. I hit the floor with needles, always lie down for injections etc :-0. It’s very weird. When I had my little boy I had four transfusions and blood tests twice a day and was fine plus I had injections to prevent clots and vitamin injections. But when it comes to going for my flu jab I still lie down…might be more in my head now but the passing out is not fun! And embarrassing! I’ve been diagnosed since 2004 however had three relapses in just over two years. Prior to that none since August 2004. Just interesting that I’ve noticed some people have been put on DMDs quickly although I’m not sure of where their m,s is up to in terms of relapse/progression just something I’ve noticed. X

I started on DMDs about 6 months after my diagnosis. I had two relapses (first one was ignored as thought it was sciatica so wasn’t until second they realised it was a relapse) so i met the criteria right away. Waited to see if the symptoms disappeared, they didn’t so i went on DMDs.

Hi,

I was diagnosed in September 2000 and on Rebif by the end of November. We were going to wait and see, but I became so ill that my neuro recommended starting this as soon as possible. However, we had to pay for it (or rather we were lucky and work paid for it).

I did fit the criteria - lesions in the right places, lots of odd illnesses that took about 6 weeks to get over and I recovered well from each.

I don’t (yet, touch wood etc, etc) have progressive MS. I couldn’t know until I had another MRI in 09. I think neuros are starting to recommend more MRI scans than just the one for diagnosis. It’s a good tool to show lesion load and brain atrophy.

I was told that the MS could continue even when I was well and this showed that it wasn’t the case…phew!

K

xxx

Thanks for all your replies. It’s something I’m looking into as my m,s has got worse in recent months with more relapses so just wondered more about the criteria and if there was one did every neuro follow that one. Interesting to hear your stories and hope your all getting on with the DMDs x

I always thought being diagnosed with rrms was when you start dmd’s. My neuro said their has been studys showing the sooner you start dmd’s the better the general outcome of symptoms.

I remember someone saying you had to have two relapses within 6 months maybe a year. I think you fit the bill for dmd’s maybe a call to neuro,ms nurse or gp to get things going.

I know someone who passed out having a blood test and since then had to be laying down when having a jab. Its what makes it more confortable for you, i watch the docs jabbing me. Helps me feel incontrol of whats happening especialy now i jab myself.

Darren.

As long as I lie down I’m usually fine. I do thinking meet the criteria and if it stops another relapse I’d be very grateful seen as this last one has left me with a dicky leg! I’m waiting to see my neuro…they are sending me an appointment through for April but I might ring the secretary to see if I can get seen in march by chance? Although that is only a week or so away. I’m sure I’d get used to the injections just wish so much they modernise and give a pill :wink: Worried how it’ll fit in with life, for instance what do you do if you have a night out planned on the injection night, nothing heavy but an evening with friends etc? Also worried about side effects especially as I have a little one, so far he hasn’t seem me poorly as such, he’s aware I have a naughty left leg and even does my exercises with me (of a fashion) but would hate to struggle to look after him. Xxx

I am in Australia so I am a bit surprised by the fact that several of you have said that you wished there was a pill. Is Gilenya not available in the UK? And Aubagio?

I am just about to start Aubagio and I know heaps of people here on Gilenya. Aubagio was only approved here in November 2012 and is only available through the Product Familiarisation Program with the drug company at this stage but Gilenya is available on the PBS (our version of your NHS)

And sadly it looks as though BG12 is a fair way off yet. I was waiting to start it but due to the endless delays my neuro has opted for Aubagio instead.

B

I’ve not heard of a pill being offered here in the UK however others on this sit may know different? I really wish there was x