purple72 18/05/17
Last reply 8 months ago
What DMD would you start with?

So apparently this question is cheating (according to my MS nurse although I think he was joking!) but I’m new to this so hoping I’ll be forgiven!

I have the booklet of DMDs and I just don’t know which one to choose. I’m getting bogged down with possible side effects, especially as the only symptom which led to diagnosis has been tingling. I’m 25 and newly diagnosed.

I’m contemplating Plegridy or Copaxone – but wondering if it makes more sense to go with tecfidera given it supposedly is more effective.

How did you choose?

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californiadreamin
9 months ago

If you follow doctors that I believe are the current top neurologists in the world like Gavin Giovannoni from Barts and Tim Vollmer from the Rocky Mountain MS center, the model has changed to treat more aggressively early. The reason for the current thinking of start with something like Copaxane and ramp is up based on older information when there were limited choices. There are now 16 approved dmt’s in the US and close to that in Europe. Tecfidera has side effects that are mostly GI related and stop when the medince is stopped or if you adapt to them. The worst side effects (liver, pml etc) all are carefully monitored these days and there are good opportunities to stop the medince if there looks like there will be a problem.

I can point you to videos/blogs from the dr’s above if that would help. Stopping the diease progression as much as possible while you are young is likely to be super important to your long term health. Knowing nothing other then what you posted, I would lean towards something like Tecfidera assuming your Dr is allowing that choice. (That is the choice my wife made after doing lots of research and we have been happy with that, even though the initial months were a little bumpy).


vixen
9 months ago

Hi there, I can only comment about Tecfidera, with which I am now in Wk 7. I am very fortunate in that I have had almost zero side effects. To perpetuate this I am rigid with timings and food types. A positive effect has been that it has made me much more conscientious about what I eat. As it is recommended that you eat with a balance of carbs, protein and fat, this makes me counter balance with lots of fruit and veg outside of this. In my whole life I have never eaten breakfast and now I have to. This is home made muesli with full fat milk.

Whatever you choose, it’s going to be positive. Older people who’ve had MS for decades just didn’t have these options available back then. One more point to think about; it’s in our natures to over-Google. Often, if you type a DMD in and click on links you might find that people who have angry or negative posts tend to report more that those who’ve had positive experiences. Just saying! 🙂


mmhhpp
9 months ago

Treat it aggresively! Lemtrada fingolimod bg12 stem cell, any that is at the top! As they say the are dmd they don’t stop ms but it is better to stop relapses from happening!


letty
9 months ago

I’m 25 and even though I’ve been diagnosed five years I only started treatment this January. When treatment was first suggested to me I did my reaserch and really wanted to go for lemtrada. To cut a long story short a year of arguments and awful appointments meant I had a choice between carrying fighting to get lemtrada for an unknown amount of time or start on my second choice drug tecfedira the next week.

I have to say that even though tecfedira wasn’t my first choice I am really happy on it. I’ve hardly had any side effects, just some mild stomach cramping when I was still getting my routine down and some very occasional flushes. One of the things that really put me off was the idea that taking a tablet at set times would be really restrictive but as long as you leave at least four hours between tablets you can be really flexible.

Just remember that the side effects you read about are usually a worst case scenario. In the end only you can make the right choice for you. X


arknat
9 months ago

Went with Gilenya/fingolimod for the convenience of 1 pill/day. Been on it last 18 months. Been relapse free since. Except for a lower/borderline lymphocyte count, I have had no other side effects.

Good luck with your choice.


adamski
9 months ago

Hi @purple72, the booklet can be challenging on decision making. I was on copaxone for three and a half years, but after more attacks I had to change recently. I felt I was being pushed toward fingolimod by the hospital, but my readings and thoughts was leading me towards tecfidera around side effects etc… I started Tec on good Friday and minimal side effects so far..
All I can say is go with your gut and make an informed decision you feel is right for you 😆 Adam.


sandwich
9 months ago

The short answer is I’d want the most effective DMT available to me.


purple72
8 months ago

Hi @californiadreamin @vixen @mmhhpp @letty @arknat @adamski @sandwich – just want to say a quick thank you for your insights! Whilst I’m still new to MS, it is reassuring to have forums like this and people like you who are willing to share their experiences 🙂

I’m leaning towards tecfidera as after much research and reflection, I think that will work best for me!


potter
8 months ago

I am going on my fourth year of Tec, I had the unpleasant stomach issues when I was first diagnosed. I started taking a good probiotic and took my pill in the middle of my meal. Make sure you follow directions and take the pill at least 8 hours apart. I haven’t had any relapses and feel a close to normal as anyone can who has MS. I took Rebif shots for five years and always felt like I was getting over the flu. Some people don’t tolerate Tecfidera well, if your one of those people you can always change. Good luck with your choice. Potter


tracyd
8 months ago

@purple72

There are many sides to the which treatment and when discussion.

My preference was the ‘go to war and kick MS’s arse method – find the biggest baddest weapon and you go to war against MS.

At diagnosis my MS was best described as ‘some numbness and tingling’ – 6 months later I was almost night blind and considering handing back my driving lisence, I needed a stick to stay upright because my left leg collapsed randomly and footdrop added to the fun, the day in a wheelchair was the final straw – fortunately by then I was only a few short weeks from having my DMT.

I didn’t wait until ‘it was bad enough’ – I had already decided it was my immune system and it WOULD obey me ….. I would do whatever you can to stop it dead in it’s tracks before it could cause too much damage – but once you make that choice it doesn’t just happen overnight – it took nearly 3 months to get my treatment scheduled.

My treatment was Lemtrada – 2 sets of infusions a year apart and if works right it gives your immune system time to forget it particularly like the taste of myelin and it ‘resets’ – no relapses no lesions and unlike every other treatment it does have evidence of allowing our bodies to heal and recover.

My advice – chose what way you want to fight back and then tell them what you want – don’t ever wait for them to offer you something, and learn everything you can about what you’re having – don’t ever trust anyone else to know and understand your treatment and condition better than you do 🙂 xxx

You have a friend request, if you need someone to talk to I’m happy to share contect details.

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