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Medication v No medication

I have recently been diagnosed, after suffering no symptoms other than being sick and loss of balance and clear vision for 6 days prior to a 3 night stay in hospital. So there was no lead up. Completely recovered after a few weeks. I am 35 years old, don’t smoke or drink. Due to see the ‘brain doctor’ next week to discuss treatment, after hearing her recommendations. Who of you have chosen to take medication against not taking it? It’s a big decision and at the moment I haven’t decided what to do… I’m just after advice and opinions of those in the know x

If i had the chance of medication when i first got sick i would have taken it. There is so much now you can have, and so much research is being done to slow down MS, so if it was me, i would go for it.

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Laura,

when I was diagnosed in 1991 I was told that I should “wait and see” however in 2006 when I spoke with other professionals it was said that we should have looked into drug options ASAP.

Research and fashions continuously develop and change. I think you should gather info and opinion from various sources, professionals, friends and family, then try to weigh up the possible pros and cons. Once you have taken a decision, stick with it for a bit whilst observing and assessing. (You will learn a lot) Do not be afraid to change your mind based on your new knowledge.

With the benefit of hindsight I wish I had been more pushy and tried stuff earlier, however I am pretty certain that there will be others with the opposite experience. I am sorry not to be more helpful. I think it is vital to have a support team that you trust who can give you guidance based on their skill and what they know about you and your condition.

Wishing you all the very best

Mick

As others have said a very personal decision but my neurologist talked me through the options, without being pushy, although when the second MRI showed further activity he did recommend that I try a DMT, which I did.

I was unsure at first and my main thought was “what if I don’t have an attack and have to be on medication unnecessarily forever? how will I even know it’s working or if I was never gong to have an attack anyway?” In the end I was swung by the thought - “what if I don’t take it and get an attack? how daft will I feel then?” I’d already lost most of the use of my right hand, and was scared about what might be next.

So I went for it. So, having had an attack and other brain changes that later showed up on the MRI, all while being on my first DMT, I have new options now in terms other more effective treatment being offered so even though the first one “didn’t work” (am on my second relapse right now, the first one while on Avonex and this one while waiting for the next treatment option to be organised) I am glad I tried it.

Good luck whatever you decide - look after yourself. It’s scary, but whatever MS throws you’ll get through it.

Hugs x

Obviously it’s a personal choice, but all the evidence points towards an early intervention with DMD’s leading to a better long term outcome.

Take a look at page 30/32 of this document.

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Getting MS is a very big event in a person’s life. I am sorry that you have joined the club.

If the neurologist wants to get you on a DMD, then I suggest you say yes unless you have a better idea. Even if the neurologist is not in a hurry to get you on a DMD, I would be asking questions about why not and what would need to happen to prompt a change in that recommendation.

I know it’s all a shock to the system. But it is as it is, alas. I have been on DMDs for about 16 years now (my RRMS has always been pretty aggressive). MS has done a fair bit of permanent damage in that time, but it would probably have done a heck of a lot more if I had let it off the leash. It seems very clear to me that DMDs have kept me as well as I am, and that is the best you can hope for with MS.

Alison

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It’s an umpteen pronged attack you need to adopt with this MS malarkey. I eat healthy and meditate which helps enormously but I am under no illusion that you need to fight it from all angles. So I take medication as well. Good luck with whatever you decide but if it was me I’d be grabbing that DMT out of their hands and having a wee lifestyle shift too. Lisa x

Due to a variety of reasons, I’ve been unable to take DMDs for more than 5 years out of my 20 years with MS. I’ve had a lot of relapses which have left lasting disability and one relapse in particular 5 years ago from which I’ve never recovered the ability to walk.

I wish I’d been diagnosed later so that the really effective DMDs were available from the start. I wish I’d been able to take a DMD for the last 20 years.

And most of all, I wish I’d not had all the relapses that I have, which have done so much damage to my body.

It is still a completely personal decision, and I can understand what it feels like to be relatively healthy, relapse free and to want to avoid the side effects of DMDs. But my advice would always be to talk to your neurologist and MS nurse, take their opinions into account and think about your future.

Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

At least if you’ve had a think about the options open to you, you will be making an informed choice.

Sue

A very personal decision - the science for DMD always seemed flaky to me.

Too many variables.

Yet… I had 8 years of Beta Interfon 1b. injections.

Still has two relapses - seasonal - per year.

Still declined.

Disabled.

Awaiting powerchair.

Good luck.

Fay

Hi,

I was diagnosed in 1994, aged 15, and was told to ‘wait and see’ before taking DMDs. In the end, I was not offered them, as I had a very ‘benign’ course of the disease for the fist 18 years… only the very occasional (like one in every 5 years) quickly-resolving relapse. Despite this, 5 years ago, I suddenly had a build up of disability, with no relapses and now use crutches and a scooter (I feel like I am now SPMS).

I wish that I had pushed for DMDs when I was ‘well’ - because obviously something was still happening even though I didn’t have any symptoms. A very personal decision, but just thought that I would let you know my experience. Good luck with it all,

Jenny

Hi Jenny

That’s a tough thing to live with, MS at age 15.

I can’t think what your doctors were doing advising you not to take DMDs after 2002 when the beta interferons and copaxone became available on the ‘risk sharing scheme’. Obviously for the first few years of your diagnosis there was not treatment available.

You could still take a DMD if you and your doctor are not certain that you are SP.

Certainly many neurologists refuse to officially label anyone as SP for as long as possible since there is a possibility that some of the DMDs will be useful for RR/SP.

Sue

Get Tecfidera. Get it and get it now. Why would you not? All this chatter about it being a big decision etc… what nonsense.

You have a disease. That sucks. Tecfidera can help reduce the effects of this disease by 50% (on average - might be more for you, or it might be less), that sucks less.

You can sit around and indulge some ‘blue skies thinking’ like “oh my symptoms are not so bad right now” but the fact is, that MS doesn’t give you heads up of when your next relapse might hit and whether it will be the one to flatten you.

So why give it a 100% chance? If a thunderous relapse is inevitable (and it is not) at least give yourself the chance to extend your current quality of life for as long as you possibly can!

DMDs are not a cure; the relapse you do or do not have over the coming years / decades might have come whether you took the drugs or not. No one can know. But the results are in, from extensive and scientifically controlled trials… DMDs are an investment into a longer, happier, healthier future.

Good luck.

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Yes it is personal.

I read posts from fellow sufferers all around the world. Some are desperate to have some medication to hang on to. I have no problem with this. But after twenty three years since diagnosis, I have chosen not to have medication. You know your own body and everything that goes with it.

Best wishes, Steve

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Tecfidera may not be available (except Scotland) unless the diagnosis is “active” MS. It was not available to me at first, hence starting with beta-interferons.

Now my MS is “highly active despite treatment” so I’ve leapfrogged the tecfidera band altogether and come out the other side to a choice of Gilenya, Tysabri or Lemtrada! Going to see neuro next week to tell him my choice of next treatment.

Hi All, I am so sorry that I have not responded and I am very grateful to you giving your time for all of your comments. I am still a bit in denial…

I have never shown any signs of MS right up until I had my ‘attack’ in December last year that put me in hospital, ultimately giving me my diagnosis (after an MRI and lumber puncture). Up until then I trained in the gym at least 4 times a week, following a ‘clean’ bodybuilding diet, I don’t smoke or drink, don’t suffer from fatigue/unusual tiredness and I had a good work/life balance and was relatively happy.
The only thing I could say I had was stress.

With this in mind, there really isn’t anything I can change about my lifestyle, except to relax and try not to get stressed.

This is why the decision of treatment is hard for me, as I never suffered and don’t suffer now with any symptoms at all. It’s a shock and I don’t believe I have it… if that makes any sense.

I have an appointment tomorrow, I will discuss treatment with my doctor then. I think I have another couple of months to decide whether to go on medication before the option is taken away from me.

Thank you again :slight_smile:

Hi Laura

It sounds like you are veering towards not taking a DMD. As we’ve said before, it’s a very personal decision.

But if you choose not to take a DMD now, it doesn’t mean you can’t change your mind later. You’d only be saying No for the present time. You can always ask for an MRI first, see how silently active your MS is being at the moment. It could be doing a whole load of sneaky things you’re just not aware of.

And then you can ask for the same thing next year, to see what the difference is from now to then. And if there’s enough activity, then take a DMD.

Best of luck with it.

Sue

Whether to take a DMD, and which one, is a big decision. In one sense, though, the biggest decision - whether to have MS or not - has already been taken. Unfortunately, no one consulted you about that one.

It is having MS in the first place that is the biggie, unfortunately. Seen in this context, the business of whether to take a DMD and which one can look like a less daunting task (I hope).

For my own part, my neurologist and I were keen to get started on a DMD as soon as possible: my MS was aggressive from the start. Some people feel the way I did and some others don’t. Some people’s MS is more aggressive in the early stages that others’. But it is a dangerous enemy for all of us.

I am sorry that you have had this load of trouble land at your door with so little warning. That must be shocking and disorientating for you. Don’t feel overwhelmed more than you can help - you will find your own path, as we all do.

Good luck with your discussions with the neurologist - .I hope you get some good guidance to help you with the next stage.

Alison

It sounds like for you taking a DMD would be like excepting your Dignoses! Sorry to say it, but you have been. Ms dose not go away because you decide it should ! Sorry if I sound harsh.

But DMD have been proven to reduce relapses, and is that not what you want ? Ok you may not have a relaps for say 10 years without a DMD, but with one it could be even longer ! (That’s my logic). Added the ‘hope’ that before ms really messes with my life a cure will be found.

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Late to the party as usual; but I decided to go with DMDs, not certain by any means (what is with this Malarkey?) but my own way of doing what I could to stop this silly disease playing havoc with me unchecked… two fingers up to it!

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I wasn’t given an option in 2005 after a very quick diagnosis like you too, but it was very much watch and wait type thing going on then…I have been lucky, but 2 1/2 years ago I had another big relapse and pushed for vit d tests which showed I was completely deficient. I was on a prescribed course for 3 months, told I was fine by my gp, but then decided to self prescribe and take vit k and magnesium too as well as following the OMS protocol. I pushed for DMDs and had a failed attempt with tecfidera due to bad blood work & now on aubagio although I’m having a sensory relapse atm & have a neuro appointment at Christmas. I think the new recommendations are to start you on something straight away to help prevent further damage. Good luck with your appointment.