@michael

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michael

To DMT or to not DMT

Hi all, A quick overview, I was diagnosed in 2007 after 2 very mild episodes (slight numbness in sole of foot and double vision, both stoped after a week). Since then I have been on the powder form of Avonex and have had no further relapses. I have recently been told that Avonex are stopping the powder form so I have to change. I'm interested a) to know peoples experiences of coming off DMT - obviously I am thrilled that I have not had any relapses - and am concerned to come off DMTs. b) which DMT are best, I hate injecting, Any ideas greatly received, Cheers all

Stumbler

@Stumbler

@michael , it would be useful to have a view on whether your MS has progressed or not, as this would assist your decision on DMTs. Have you had regular MRIs, or can you request one? There's a range of DMTs now available, from injectables, to infusions, to oral tablets. You'll want to read the following link, to understand the possibilities :- http://support.mstrust.org.uk/file/MSDecisionsWeb.pdf

potter

@potter

I had a wash out month when I changed from Rebif to Tecfidera, I hadn't had any progression while I was taking Rebif. I didn't have any problems pop up during my wash out month. Potter

michael

@michael

Thanks all, @stumbler, I have been having CT scans every year and always get the same response :- there is significant demyelination, there has been no progression BUT the CT scans can only show 20% of the brain so we can't definitely say there has been no progression. @potter, Tecfidera is the oral right? how often do you have to take? Also, is that the one where you have to be observed over night due to possible heart issues - What do you mean by washout? Thanks again

potter

@potter

Tecfidera is oral and you take it twice a day in the middle of a meal. I looked into the DMT where you have to stay over night in the hospital but my pulse rate is too slow to take it. I have been on Tec for almost three years and have done real well, other MSer's taking it quit within a year. If you decide on Tecfidera I will give you my best suggestions on how to minimize any side effects during the first couple of months. Good luck with your decision. Potter

Stumbler

@Stumbler

@michael , it's a difficult decision if you are unable to see any progression. But, as you say, scans only show a a part of the picture. A medical viewpoint, which is gathering momentum, is to hit MS hard and fast with the best treatments, to minimise any brain atrophy. "Time is brain" is the underlying strapline. Gilenya (Fingolimod) is another oral option that requires 6 hours of monitoring after the first dose. The washout refers to the period of time between stopping one medication and starting another, to give the old treatment a chance to "wash out" of your body.

TracyD

@TracyD

@michael Great that you're not relapsing - the zen state we all hope to be in. Are you having regular MRI's with and without contrast aren't you to confirm that the lesion load in your brain and spine is not changing ? As @stumbler has said, time is brain, just because you aren't 'experiencing' a relapse doesn't mean that MS isn't causing damage to your nervous system. MS is a progressive condition it marches on and makes progress continuously. Increased lesion load = increased brain atrophy and continued damage even if you are not experiencing relapse symptoms physically. For me when I was diagnosed and the subsequent MRI progression was evident I went straight for the most effective DMT available at the time. I'm now coming up on 18 months with no documented disease activity (and no relapses) no new lesions, no active old ones and they're less pronounced than they previously were. For me a DMT was the only way to give me the greatest guarantee that the disease would be halted for as long as possible.

michael

@michael

@tracyd @ stumbler. Thanks, just had my yearly MRI last week, no new lesions and no progression of old ones, brian atrophy normal for my age. That makes it 4 years in a row of no progression, My MRIs from the UK have been lost so I have no comparison prior to 2011 unfortunately. My thinking now is, not taking DMT for 6 months / 1 year and seeing if there is any progression???? I don't know!!!! Thanks for all your help

TracyD

@TracyD

@michael Whatever you're doing keep it up, sounds like they are confident that you're pretty stable. It has to be whatever you're comfortable with but if you've got 5 years of MRI's with and without contrast and it's all quiet and dark. with no activity then potentially if it 'aint broke don't fix ir. For me it wasn't dark and quiet on my MRI's they lit up like christmas decorations