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Anyone diagnosed but not on DMT's?

Would be interested to know if anyone here diagnosed with RRMS but decided against going on DMT’s?

I’m not sure my symptoms are severe enough to warrant starting medication and the low 30-50% success rate vs potential side effects is even more off putting.

I already on Gabapentin for pain and Fluoxetine for depression. I really didn’t want to add another drug into the mix if I could avoid it.

I had appointment with MS nurse on Friday and she is really pushing for a decision on starting DMT’s or not. She has recommended Tecfidera and given me a booklet on the drug. However, it feels like they’re only interested in you as a patient if you’re on one of these DMTs, If you say no, it’s like, well that’s your choice, there’s nothing we can do for you, see you in a year’s time. Has anybody else had a similar experience or do you all have really helpful and empathetic MS Nurses…

Well, that’s exactly it. It is your choice and there is nothing else they can do for you. I was initially on Tec until it became obvious my diagnosis was ppms and not rrms. Personally, I’d be snapping the opportunity to start a dmd as soon as. Any possible relapse can be with consequences and as you are aware, the point of dmd is to prevent relapse and slow progression. Believe me, if you were to have a relapse that compromised your mobility, use of hands or whatever, you may well find yourself wishing you could turn back time.

I’ve not got a similar experience in the slightest.

However, since I had a bad drug reaction to Avonex initially, and Copaxone had stopped working after 5 years, I wasn’t on a disease modifying drug when I had the nastiest relapse of my MS life. My legs stopped working within 3 days, I could feel nothing below the waist, ended up in hospital, then rehab unit altogether for 8 weeks. The IV steroids worked to a degree, but I never walked again without FES (or an orthotic) and a walker. That was nearly 7 years ago.

Previous to that, I always used to tell people that I’d been relatively lucky. I had MS, but wasn’t disabled by it. I don’t tell them that anymore. But then I don’t need to, I am a wheelchair user so it’s obvious.

I was diagnosed in the days of there just being an option of beta-interferon or Copaxone. Since the big relapse, I tried Tysabri and Tecfidera and had side effects from both that made them impossible for me. But I still believe in DMDs.

I understand why you might not want to take a drug that might give you side effects. But for me, the risk is worth the benefits. And you can always stop a drug if you find the side effects make the risk not worth the benefits. And Tecfidera is a good drug, apparently it works best when it’s your first DMD. If you think about the relapse reduction rate being about 50%, for some people that will be 20%, and others 80%. And it’s not just the number of relapses, it’s the severity too.

Hopefully some others will reply to you who are in a similar position; this is just my experience, and my belief about the drugs. Ultimately, it’s your decision. And I’m sure that you may not get to see your MS nurse quite as often if you don’t take DMDs, but they will still be there and available to help if/when you have a relapse.

Best of luck.

Sue

I also believe in DMDs. When I was diagnosed there was nothing and it was a long hard fight to make the Interferons and Copaxone available at all.

I think that often when people are first diagnosed their symptoms are fairly mild and it is easy to underestimate what multiple sclerosis can do. Be warned, your next relapse might be the one that has you permanently disabled. That sounds harsh but it is reality and you are lucky that you have been offered a drug that will reduce the risk of that happening. A lot is made of side effects but relapses can be worse. You might feel that your MS Nurse is pushing the use of DMDs but that is because she knows what can happen without them and probably sees many patients who left it too late.

Good luck with whatever you decide to do. I’m glad for you that your symptoms are not severe so far, long may that last but the chances of that will be greatly improved with DMDs.

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Hi

Eastend Girl, I am a Corrie Boy myself

I suspect you are quite young, I am in the winter of my life.

Your MS nurse probably has about 300 cases she deals with and MS is pretty predictable for 85% of cases and he or she will know the outcome of people over a period of time, just like myself and the nurse wants to help you to survive with as few problems as possible.

This is me 15 years ago, few bits of problems then a major relapse, saw neurologist gave me strong steroids fixed for 6 months, then another relapse more steroids did not work as well. I had scaring in my body ie permanent damage. Another relapse steroids no longer worked they do not repair damage. Started with a stick and a rollator, walking now poor. Another relapse in hospital for 7 days put me on Tecfidera over 3 years ago 2 tablets a day no side effects and no more relapses.

DMT`s were not available when I had my early relapses that is why I am a badly disabled and moved from RRMS to secondary progression.

Poppy,Sue and Val are all correct, it is a no brainer.

Pick up the phone at 9am Monday and hopefully you won`t be like me.

Watch Corrie in the evening, I saw the very first episode in black and white when I was a boy.

Bertie

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Hi, was just in today seeing the Neurologist as part of the Northern Ireland Review, i was diagnosed April 2013 and have not had a relapse since. He has recommended Tecfidera for me to start on ASAP. I am pretty apprehensive about it all since i feel so healthy as it stands but reading some of the comments above it does remind me that i could relapse at any time and be left a fair bit worse off , so its all good food for thought until im contact my the MS nurse this week maybe. It could also be the end of my working offshore in the North Sea oil and Gas as im not sure if id be able to take this medicine offshore especially if i have side effects.

I had a terrible time on Avonex. With MS it’s not ‘choose your dmd’ its ‘choose your poison’. It caused seizures and now I’m epileptic and far worse than when I started - BARGEPOLE!

Not sure if this will help but I take Ditropan 2.5mg x 2 Lyrica 150ms x 3 Baclofen 10mg x 4 daily and inject Rebif 44mg three times a week, I have not had any side effects and am hoping it is stopping any change. I have been using the DMD since Jan this year. I can walk (with a slight limp on the left hand side) other than that no one would know. I would try anything to stop this. Good luck with your choice, but I would say yes and if too bad come off the drugs, you never know they may well be a permanent option by then. Always live in hope.