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ScienceGeek

Choosing the right DMT

I'm having a hard time choosing the right DMT to take. Here's a little bit of background: I'm 36 and was diagnosed with RRMS in August 2016. At diagnosis, my neurologist said that he thought I had had MS for at least 12 years (and I had been fairly sure I had it for about 4 years before being diagnosed). Initially, I wanted to start on Tysabri and the neuro agreed, but with mix ups and mistakes, I never got an MRI with contrast done in time and so in the end I wasn't eligible. I started taking Tecfidera instead, and I still have some (mostly manageable) side effects. I have no symptoms at present other than a bit of muscle twitching and some neuropathic pain on my back. So overall I consider that I am completely fit and well and able to get on with day to day life. My main concern is about the future, SPMS, brain atrophy and disease progression. I also don't want to miss a window of opportunity for Lemtrada if it is likely to work better now while I am still completely functional, but I feel that the risks of secondary autoimmunity are too high. I think Cladribine would be a better bet in terms of the long-term outcome, but considering that it can only be used off-label that puts me off a bit. My question is really: what would you do? Would you try Lemtrada despite the side effects and downsides. Would you push for Cladribine? Would you just stick with Tecfidera and see what happens? Thanks all!
@Vixen

Hi @science geek. I am a few months behind you, in that I was diagnosed in Jan and have been on Tecfidera for three months. Fortunately I haven't (thus far) had any side effects and am doing OK. In my case I listened to others - such as those posting on this site - who were further down the line and flagged the importance of starting on DMDs to maximise chances of leading a full and active life for as long as possible. Recently I've also been thinking - why did I jump straight in to Tec, why didn't I think for longer? I've reasoned with myself as follows: i) good grief, what would people 20/30/40 years have given to have had these opportunities? ii) there is no way of knowing how Tec has/will/might affect me in terms of efficacy; no-one will be able to say in 5 years time 'well, if you'd taken Lemtrada instead of Tec over this past 5 years you'd have had a 20% greater benefit' iii) as you will know, there are things popping out of the woodwork all the time in terms of research; in 5 years I will be better informed about my own MS and my choices for DMDs will also be better informed. I hope this makes sense. It's my take on things, anyway! All the best to you!

@californiadreamin

@sciencegeek Thanks for posting. This is a topic I think about a lot lately. My wife was diagnosed in Oct 2016 and we are about 10 years older then you but its likely she has had it for at least 4-5 years looking back. We are currently on Tefidera, but with any DMT i think its important to think about when is it time to change the drug you are on. Its good to think through what the point would be that we should transistion to something Would a more effective drug be better to start sooner (ie Ocrevus?, Lemtrada, HSCT, etc). Here is my thinking but feel free to jump in and reason through it with me: o First drug effectivness are averages and actual effectivness tends to be skewed towards the ends (ie the drug doesnt work for you almost at all, or its very effective for a long time till the diease breaks through). So the idea with NEDA is to keep the diease activity completely stopped as far is we can see via MRI's etc and the moment there is activity consider moving to a stronger drug. At the moment my wife has gone 6 months with NEDA on Tecfidera. Her symptoms are on par with yours. o Do everything we can through lifestyle modification (we follow OMS overcomingms.org). Includes diet, exercise and mindfulness. o Still waiting on Ocrevus brain atrophy data which is sadly not available as far I as I can. Also waiting on some time to see how the drug does in case there are unforseen effects (tumors etc). o There are couple drugs in the pipeline that I have eagerly awaiting the results of later this fall: https://www.geneuro.com/data/documents/GeNeuro-presentation-January-2017.pdf and next year see how this one goes: http://files.shareholder.com/downloads/AMDA-2ZWAH8/4632525451x0x942119/46484DF3-27E3-4951-9538-8F13D7B7341A/AtaraBio_Corporate_Presentation_June_2017.pdf Both of these seem extremely safe and likely at cure like levels if they work. The mechansim in which they work is very selective rather then the broad brush immune drugs we have today. o Take supplements that have low downside risk that have shown to be beneficial in at least some initial studies: D3 Alpha lipoic acid (the r type) not to be confused with the one from flaxseed (https://www.youtube.com/watch?v=JTGVHQt66YA&feature=share) Biotin (its not high dose just the normal stuff you can buy) -https://multiplesclerosisnewstoday.com/2016/04/27/meddays-md1003-reversed-disease-progression-in-not-active-progressive-ms/ B1 B12 Probotics Turmeric flaxseed oil (20ml a day) (overcomingms.org) o Anyway long post but what I think most dr's today dont factor in is how a new drug on the market may change what you do today. I think our next step would be to move to Ocrevus or possibly HSCT depending on how severe things are but would reevaluate at the end of the year if nothing happens.