Forum

DMDs or not

Hi All,

have been recently diagnosed with RRMS but to be honest I think it maybe a very slow burn PPMS (my neuro is a great telling you after you hit the wall, previous MRI in Nov 2014 had repaired and he said I had a “low” chance, 5 months back in his office for a diagnosis!). Can not really tell as there has been very very slow progression in symptoms/impacts but was told “prognostically” I am in a good place based on:

  • MRI: 4-5 brain lesions, 1 neck

​* 1 year between relapses - or at least based on when MRI taken, if taken last year sure it would have been there on the neck so think this 1 year is just due to what was MRI’d and when. Brain lesions actually better than 1st one a year ago

  • LP was clear

Going into the nurse in a couple of weeks to look at DMDs, got sent a booklet which I have brushed through but just want people’s views and experience. I know each case is different but a scattering of anyone’s input is a useful food for thought in this journey.

My symptoms and impacts are all very mild, to the extent I am almost embarrassed to be potentially taking away resources from others. Occasionally buzzing in right leg/foot, mild hug sometimes on right upper arm/tricep, crunching knees sometimes, mild tinnitus. Still very active, if anything more than so totally able bodied and mind wise than ever.

So not sure do I wait for another relapse and then think about it just concerned the DMDs come with a bunch of side effects which might make me feel like I am going backwards and stuff that then actually impacts my life. To now (touch wood and thank my lucky stars) no impact on movements, working, doing anything so far. Being diagnosed and also getting family on the same page has also reduced stress levels. Just understand that DMDs “can” reduce frequency and severity of relapses, improve recovery of function (if anything only non recovery so far is the slight crunching of my knees from the last one) and potentially alter disease progression. So do I jump in be aggressive now and try and get ahead or wait ? I am starting on the D3, 1000Ui (NHS conservative guideline) but tempted to up it to 5000 Ui and may start on B12.

I know there are no guarantees but feel if I miss the boat I may regret it but feel as things are mild might be better to wait… Got told by one family member enjoy the present (i.e. if “ok” now don’t do anything to impact that) - very easy to say as they do not understand you maybe cannot go back and repair and recover things. Also comment made from someone who cannot think beyond their end of their nose and talks a live fast and die young attitude but does not really understand it. I should ask the question of others what would they do …bet that gets met with slippery shoulders, caveats and excuses. A bit of shorter term inconvenience and impact from side effects may make things better going forward.

Any views on what might be best DMDs in terms of side effects for someone in a mild state at the moment? Prepared to inject if I have to. To me now and in the short term impact on quality of life is most important as seems all DMDs have similar impacts medically so does not seem to be a case of go for the stronger or bigger side effects one comes with more benefits.

The booklet I was sent I will read fully before but am already raising my eyes to heaven with comments on side effects being split into less common (<1%) to more common (>1%), well >1%, is that 2%, 10%, 30%, 50%,90% = vague.com !!!

Thanks all and all the best

C

Hi

Just wondering - do those good folks advising you to enjoy the present and live fast have MS? Are they looking at an unknown future with an incurable chronic degenerative neurological condition?

To be blunt, at best you will stay as well as you are now. But realistically, that next relapse is just waiting to pounce when you least expect it. And it can take you off your feet for months at a time if you’re unlucky. And then another one, and another one…and not just some tingling and numbness but significant symptoms which leave damage…

Why would you wait for another relapse when that’s precisely what DMDs can help prevent? To lessen the frequency and severity of future relapses? Believe me, if you can do anything to prevent just one of those, think seriously about doing it. And don’t get bogged down in side effects, mostly they are soon over within a few weeks of starting, and a major relapse is far worse. Choose the DMD that suits your lifestyle and that has the best results.

Sorry if that sounded harsh but never forget MS is one of the big ones. It doesn’t go away, ever. You have to throw everything at it and we are lucky that nowadays we have so many more options.

Wishing you all the very best with whatever you decide to do

Val

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I totally agree with Val. Relapses can have remission, either partially or totally, but the damage they can leave behind is potentially disabling. The side effects listed for DMDs are mostly short lived. And if you start one drug that doesn’t suit you, there are now a load more options open to you. It’s obviously your decision in the end whether you’re prepared to risk potential relapses balanced against side effects.

Sue

Hiya

Have to agree with Val on this one.

Shazzie xx

New guidelines for MS released by the Association of British Neurologists

Published date: 22 Jun 2015 at 9:03AM

Today the Association of British Neurologists (ABN) has published a new prescribing guideline that advises how Disease Modifying Therapies (DMTs) for relapsing remitting MS should be prescribed and monitored in UK practice.

There are ten DMTs currently available on the NHS and 11 in Scotland.

Taking a DMT has a significant impact on the course of MS, preventing relapses and slowing the worsening of disability. They enable people with MS to take greater control of their condition and their lives.

More info: http://www.mssociety.org.uk/ms-news/2015/06/new-guidelines-ms-released-association-british-neurologists

Stewart (admin)

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Dear chrisw01.

Let me make this easy for you. And i mean terrifyingly simple. Do this:

Take D3 - up to 5000IU is good. i take 4000 daily. I also like to sunbathe my mushrooms (search the forums)

Take B12 - i take 1000mcg under my tongue daily. Injections and all kinds of whacky crap is available. Just remember, don’t get a pill to swallow, coz your belly cannot digest it; complete waste.

GET ON DMDs RIGHT FREAKING NOW!

If you don’t, the sky will not fall. You might even get better and never relapse again. But if your diagnosis is correct, you probably will.

When faced with inevitable relapses, reducing their frequency and thus, limiting the accumulation of life altering symptoms and disabilities is no bad thing, and so the sooner you start, the better.

But which DMD?

Easy. Tecfidera. A twice a day pill, which has only mild side effects for a short period of time, at the beginning. No needles, no refrigeration, no flu like symptoms, no injection site complications, no needles, higher rates of efficacy, easily treatable side effects, no needles. You get the picture…

Of course i need to mention the mandatory caveat for anything and everything posted online, but especially in forums regarding MS:

  • everyone’s disease, lifestyle, symptoms, disability, drug tolerances is different.
  • This post is based upon MY opinion from MY OWN experience, given MY set of circumstances and MY preferences.
  • for MS, the big questions remain unanswerable even if you do manage to do everything available to fight it.

There are no guarantees, but if you do not fight the good fight, then by definition, you have already lost. The single best attribute you can have in this predicament, is a strong, positive, wilfull, mental attitude.

Live this life and live it will! The very best of luck to you!

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Agree with others and take the DMT while the offer is on the table. Personally I went for the strongest one available.

Live this life and live it WELL!

(why is there not an edit function for posts? this is embarrassing)

Gotta agree with everyone else!

That next relapse might put you in a wheelchair, why take that risk?

I ignored the sporadic weird minor numbness and walking problems that I had for years, I almost feel the MS got pissed off and decided to force me to do something about it, because Christmas 2012 I woke up one day to 3/4 of my body numb and really struggling to walk. It was like, “try ignoring THIS!”.

If I’d gone to the doctor back in 2008 when I first had symptoms, I’d have been on treatment before that 2012 biggy, and my life might be different now, I might still have a job now, and a fully functional brain still.

So please, do yourself a favour and get on a DMD. Don’t guilt yourself out of it because there’s others who you feel need it more. MS is MS, you don’t deserve treatment any less that someone who’s disabled because of it, you don’t have like just a little bit of it, MS Lite…

Take the DMD, and slow that sucker down, keep the excellent quality of life that you currently have.

i would get on a dmd quickly, i was never offerd a dmd they werent about when i was diagnosed,

when i did get diagnosed my ms was hardly bothering me,i went 8 years between relapses,and i thought i was always going to be ok and that my ms would not progress,how wrong was i,after a massive brain stem relapse in 2005 i was never the same,i went onto secondary progressive,so they tell me, but i think i am more PRMS as i still have bad relapses,but they insist i am spms with relapses,i wish i had been offerd dmds at the start, but maybe i wouldnt have taken them, them who knows?

what i am trying to say is if you have been offerd a dmd i would take them up on there offer,i wish i had taken them, i maybe out there still enjoying life instead of being housebound.

Just my tuppence worth; I nagged them into giving me a DMD practically as soon as I was diagnosed (throw everything at it straight away, I thought) and have been on beta-interferon injected three times a week, since February 2014. I don’t like injections, but they put me on Rebif with an auto-injecting machine (the RebiSmart) and I’ve got the hang of them… they’re not great but not the end of the world either. I haven’t had a relapse in the last year and a half - well, nothing I’d consider a relapse, although I’m pushing it to say what constitutes a relapse - everyone seems to have a similar problem with definitions!

Agree with everyone else. I was dx in Oct last year. Highly active RRMS. Having had at least 6 relapses in 2 years, each getting worse. Was put on a DMD straight away and have not had a relapse since (11 months now). Had the first Gp I saw realised sooner I may have missed to last 2 which were the worst. You never know when a relapse will appear and bit you on the ar*$. Good luck. Cherry x

Hi,

my input, think carefully about which DMD suits you and then get on it IMMEDIATTELY!

You may be in a fortunate position currently and I hope that remains but anyone who doesn’t try to maximise that opportunity is foolhardy .

good luck

Adam

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Hi chris some great replies im just now waiting for my contrast mri and then my neuro has said he wwill hit me with dmds so to go read and get prepared of the facts so i can make my mind up

Respect sheep

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I am currently on Tysabri. It seems to be working wonders. It is given by infusion.

I wanted to give you some advice about your feelings about taking something away from someone.

I have been diagnosed with MS since I was 22, so going on 12 years now. One thing I have learned, yes it has taken me almost twelve years, is that never feel like you are taking resources away from other people you need them just as much as they do. I ended up in the hospital for the first time a couple of years ago and felt so guilty knowing that there where people suffering in the heat and humidity of Arizona that needed the care a heck of a lot more than I did. It took my mom and my PHP and my Neurologist to get it through to me just how bad it could get for me. And it has gotten really bad I will be 34 on the 29th of July and I can barely walk without assistance my six year old niece doesn’t know me as a hard working political consultant that I used to be. She will only know me as her sick aunt that has a wheel chair and a walker and is in and out of the hospital. I just do not want you to feel that you are taking anything away from anyone. Because the longer you wait the bigger the chance you take with you health.

Agree with all the above posts , would recommend Tecfidera, but also think about life style changes, ie diet + exercise + vitamin supplements.

Hi Chris

I have been told that the new rule of thumb is “hit it fast and hit it hard”! Get all the help you can. I’ve been on Aubagio for five months now and so no side effects. One tablet a day with or without food so easy. I was DX six years ago with mild rrms but I’m getting problems with my right leg now and I wish I could have taken meds then. Don’t feel guilty as I have gone through that as I’m better than a lot of people but its still MS and a crap illness!

All the best Dave

Thanks Gingerlil, my mind is now made up post my MS nurse appointment. The finders sounds the best option and I have read a number of positive things about it. Trying to be more healthy, watching diet tweaking it, find high fat things don’t agree well with me and on Vit D 1000ui but will increase it ( against the NICE quoted. Guidelines from the nurse) not sure what if any other supplements are relevant

C

Sorry meant to say thanks to all for your views and experiences. Very clear for me to see the way forward, no doubts on the way to go as need to throw all I can at this

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