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Didn't start on dmd till 9 years after diagnosed ??

Hi,

I was diagnosed in 2010, had rrms since at least
2007. I didn't start taking disease modifying drugs
till just over a year ago. Started on COPAXONE injections
3 times a week. Had mri, new lesions so after
talking with neurologist she said if I wanted to change
Dmd. So she suggested tecfidera, which I started a couple of days ago.
I just wondered if you started dmd medication later on
Into being diagnosed if it made any difference to
how ms progresses???

Any help would be appreciated

Thanks in advance.

I did the same. My first DMD was tecfidera, 10 years after my diagnosis. I'm doing well 15 years past diagnosis.

Katy

Lab

Hi all, 

I was newly diagnosed mid last year, was recommended copaxone. I have had one major relapse with my eyes and weakness in one leg (two relapses last year) stopped copaxone after 5 weeks, hated the side effects and caused lipoatrophy within 5 weeks of taking it. 
 

I have now been offered either tysabri, lemtrada Or mavenclad. Need to decide which one to go on. Still thinking do I stay without medication and see what happens or start medication. 
 

I am well in myself at the moment and MRI scan does show activity. 
 

how did you two decide not to take medication once diagnosed? And how many relapses did you have before diagnosis?

 

I would appreciate your replies 

Hello
When I was first diagnosed, there were only injectables available. I was feeling too well and too scared of having to inject myself so waited till tecfidera got approved which i qualified for :))

It sound like your MS has already given you a taster of 'what happens'. 
 

My MS was very active from the start as well. I am sorry you didn't get on with Copaxone - I'm sure I wouldn't have either, being rather thin.  Fortunately for me, I was put on Avonex for 10 years. It held the line pretty well for most of those, but then I had bad relapses again, and have now been on Tysabri for about 10 years -  no relapses since starting it. The disabling relapses I had when the Avonex was no longer working well have left me with limited mobility and brought my hill walking days to a permanent juddering halt. But  but I get about pretty well for short distances and feel well and strong, going to the gym swimming, all that. There is no doubt whatsoever in my mind that my mobility and general health 20+ years after dx are radically better than they would have been without DMDs.   By the way, I wish Tysabri had entered my life a bit sooner, but, as I have just said in reply to someone else, there's nouse worrying about water under the bridge. 
 

Unchecked RRMS is a brutal and merciless enemy, I'm afraid. But the highly effective DMDs can stop it its tracks, if you're lucky. I am glad that you have been offered the kind of drugs that really can give you the best chance of staying as well as you can for as long as you can. 

Alison

If you have active RRMS, I think the best time to start DMDs is now. There's  nothing to be gained by wondering what might or might not have happened had you started earlier - that's water under the bridge.   We all have our dark moments when we ruminate about what might or might not have happened had we done something more or something different earlier - well, I know I do - but it is as it is. 
 

Alison

Lab

Hi

Thanks for your replies

I think I may lay off taking any medication for now as I am thinking about starting a family soon.
I was more inclined to start taking Tysabri but scared of this rebound effect! E.g if I start taking it and then decide to stop when I decide to try to start a family.

So I’m thinking I may go on some medication for the long term after these plans. I just hope I don’t have a relapse whilst I’m taking this break!

I just wished copaxone worked for me, but it really did knock my confidence when I noticed signs of lipoatrophy within the 5 weeks I took it. It has left me with some Nasty indentations and discolouration to my injection sites. Not so slightly really, it really did start to affect my self esteem.

I am well at the moment, let’s hope I stay this way.

:-)