I was diagnosed with RRMS almost 2 yrs ago. I had the probability of having MS hanging over me for 12 yrs though. Anyway, so far I’m mild, no issues. 2 relapses in those 12 yrs, nothing lingering. I was keen to avoid injectables. Now Tecfidera became available in Scotland, I’ll be starting soon. Seeing i have been well for years, i find it hard to start any drug with side effects seeing i have to keep up with two pre-school kids. I’m now wondering if there are people who chose not to be on a DMD or people who are benign MS and yet also chose to go on treatment. Thank you.
Hi there, I can only go on my experience. I was dx 6 years ago with SPMS but really think I had it for about 20 years but it was so mild I just brushed it off as nothing to worry about. Looking back the signs were there occasional numbness and always seemed to be tired but I had 3 children so you do get tired. Now the left side of my body is very weak. Can’t walk very far,walk with a bad limp and need a stick to walk with. I need a wheelchair for longer walks. I have no idea how more disabled I am going to get. I didn’t get the option of dmds. If I had the option before things got this bad it would be a no brainer. You do have to make up your own mind but once you get to SPMS there is no going back. Think carefully Mags xx
Your story sounds similar to mine except mine started 20 something years ago!
In all that time I was never offered DMDs.
I don’t really remember them being about when I was first diagnosed anyway.
My MS journey has recently morphed to SPMS from RRMS so definitely no DMDs for me in the foreseeable future.
The decision as to whether to take DMDs must be yours.
My RRMS on reflection was fairly mild compared to some on the forum so I guess you could say I have been “lucky”!?
Would my MS have morphed to SPMS with DMDs?
We will never know but I have no regrets in the meantime.
Time to end this post I’m getting philosophical! Sorry!
What ever your decision Take great Care>
I was diagnosed almost four years ago, and was (am) in a similiar position. I declined DMDs. Before the chorus of disapproval starts, I would add that this was with my neuro’s complete backing, so I have never, at any time, gone contrary to professional advice, and he did promise he would tell me if he thought I was being silly.
He did not attempt to influence my decision at all, but when I steeled myself for the expected confrontation when I announced I didn’t want them, I was surprised and relieved to be met with: “Good girl, that’s what I’d have done too!” I did take into account that I believe I’ve been ill for many years - like you. In fact, at my last consultation, we discussed that it might be up to 24 years, despite my only being diagnosed for four of them! If I’ve really been getting on OK for over two decades without treatment, I see no urgency to start now, and certainly any notion of “catching it early” is long gone, as far as I’m concerned.
I do appreciate it was, in some respects, a gamble, but everything’s a gamble and a compromise. If you accept the meds, they do have risks and side effects, and of course, they might not work. One thing I was very clear about from the start was I was not going to beat myself up about the decision, no matter what subsequently happened. We know they don’t stop all relapses - only about a third, on average - so even if I were to have a big relapse now, I would never know if could have been avoided, or if it would have been one I’d have had anyway.
Obviously, if I had taken the drugs, everyone would now be congratulating themselves on how well they’d worked, and I too would be assuming I’d done the right thing, little guessing that I might have been fine without, too.
In the words of my neuro: “If I could promise you these would make a big difference to you in ten years time, I’d be pressing you, but I can’t!” I’m now through four of those ten years. I’m not going to pretend I feel just fine, because I don’t. Like most people with MS, I’m well aware I’m ill, and that it isn’t “normal” to feel as I do at my age. Nevertheless, I can still walk over three miles, and (not wishing to tempt fate) haven’t had a relapse that I’m sure about since diagnosis. In other words, a few patches of “something and nothing”, that might have been mild relapses, or might just have been that I was stressed or had a cold or something. Nothing very dramatic.
Recently I’ve seen a new neuro (my old one hasn’t left - just delegated me to his registrar, I think). This one is much more pro-DMD than his boss, but still reluctant, in my case, because of the possible 24-year history, the fact I haven’t had a relapse in ages anyway, and am still walking three miles. He says if I were to start now, he’d have to counsel me about risks and side-effects, and of course, neither of us wants to get into that territory, considering I’ve done well without treatment for possibly over two decades! My concern is I might actually have a lower quality of life on treatment (because of side-effects etc.) than leaving things alone, so we’ve all agreed to leave it alone. The only downside is my neuro reports would be absolutely hopeless in any claim for benefits. as they all emphasize how well I’m doing, and that once again they are content to refrain from treatment. I do take treatment for symptoms - I regard that as an entirely separate decision from the DMDs.
I’m diagnosed over 10 years and have never been on drugs . About 3 very mild relapses since then but nothing severe to be classified as a relapse but I just know in myself that things got worse for a while. I still go to the gym and dancing (truncal ataxia notwithstanding). Speak to your doctor and find out why they are going to put you on this drug. If could be a standard thing that you could refuse if you so wish but find out some facts first.
Good luck hun
Your question has prompted me to ponder (good for the little grey cells - thank you) I was dx 20 years ago when there were no dmds after a first debilitating episode I had no further relapses so I was either benign or very slow PP. The point is I have gone rapidly downhill over the last 3 years and now have SP on my file. If I had taken DMDs would I be in a wheelchair now? If I had taken DMDs would the side effects have negatively affected those “good” years? Alas I don’t know the answer to those questions - and you don’t have a future looking glass to know if you will join the secondary progressive club in years to come. I’m sorry that I have been of no help whatsoever but I wanted to acknowledge what a dilemma it is for you Jane
Diagnosed 10 years ago but probably had it for much longer (now 53).
It took me 9 years from diagnosis to accept that I really did have MS. It was not until I had a specific relapse in which I thought I was having a stroke - lose of feeling, inability to move and slurred speech. Up until then symptoms (apart from fatigue) were mild. Everyone around me including my partner used to say they had got the diagnosis wrong, I could not have MS, I looked so well !!
I was encourage to go on interbetaferon straight after diagnosis but side effect mad life hell for me. I tried Avonex then Rebif and then opted out of DMDs. As they said DMDs would not help with fatigue (my main problem) I searched for something that would help and Modafinil was the answer.
Now 10 years on and whilst still RRMS I feel the next stage is not far away as my overall ability/mobility/cognative/coordination etc is not as it should be. So I am to start Tysabri soon, I hope it is not too late to prevent things getting worse but the Nuro did feel I should have been on DMDs long before now.
Anyway, I have no real regrets leaving it this long as I have had long periods of being ok and the last thing I wanted was to be constantly reminded of this condition by having to take injections and dealing with side effects every day. Of course I will feel sad if I have left it too late but as long as I have support to deal with whatever comes then I will endeavour to try and make the best of it. But i do wish there was a pill that was proven to eliminate fatigue and stop and reverse the effects of MS but there isn’t.
As for you then, I would suggest you get as much information as you can about what is on offer now (DMDs have changed a lot since I started) but don’t feel pressured to make a decision, take your time, perhaps try one and see how you get on with it - you can always opt out at any stage.
Whatever you do, it must be right for you and there is no point in regrets or allowing anyone else to tell you what is right or wrong.
Take good care x
Thank you for all your advice! I appreciate it. I’m the type who over researches stuff hence me being aware of everything that comes with the drugs on offer. I took a long time to decide on tecfidera. I got three different neuro opinions and my main neuro is a MS neurologist. A specialist in the field. After many discussions with him and others, it seems that although I’m fine now, it would be dangerous gambling to not try a drug. I wouldn’t want injectables but I’ll give BG-12 a shot seeing i waited for over a year for it to be approved Thanks again. Btw, I’m Katy.
Hi Katy. Good luck, it’s so hard to know what to do, I was dx 2yrs though they think iv had it a lot longer, as I was a fit dance teacher salsa, I would try anything to get my balance back, could still walk round golf course using electric trolly to hold for balance, think mabe should have give drugs a miss can’t play golf at all now and can only just walk across my lounge without a stick, but would I have still been the same?? Who knows. Iv stopped taking all the pills now, still injecting rebif, should I stop, scary Ay
The trouble with MS is you just don’t know.
At its best it’s an inconvenience and at its worst it’s a truly dreadful condition. Most people’s paths lie between these two extremes. There is no way of knowing what the path for any individual will be and to make matters ‘more interesting’ it can switch paths midway along its course.
Personally I would be guided by my medical team as they can weigh up the situation in my own case. Although I didn’t have to make the decision as I’m not eligible for DMDs
Good Luck with whatever you decide
Take the drugs.
My best mate was DX 12 mth before me with RRMS I was DX SPMS.
Interfarone was quite new them, about 13yrs ago and he was given it and is still on it.
He doesn’t look or seem any different today, you wouldn’t think anything was wrong.
I walked into the consulting room without any physical signs other than a slight limp.
I am now permanantly in a wheelchair with little mobility and a nearly useless left arm.
TAKE THE DRUGS IT YOUR QUALITY OF LIFE.
As many have said the choice has got to be yours im 14yrs in and a DX in this year of sorts i have been offered injections 5 months ago agreed and have heard nothing since i know id hate to stop the meds im on as im in pain on them and have been for 14yrs if anything happens and im offered them again in the future or at my next appt’s in 6 months time then yes i would take them but thats just me its gotta be your decision all the best for the future
Hi sheep, don’t just wait to be contacted, I did that for months then found out I had been forgot and the buper people I was waiting for to contact me, hadn’t received instruction, when they did make contact and I asked why it took so long, they said they work on a 5 day turnaround they just hadn’t heard from the Ms Nurse? Or hospital, get on the phone mate, it doesn’t pay to be patient, polite helps though. Good luck.
I think that the more effective treatments can make a difference to the disease.
I have been taking Gilenya for 3 years now and in that time I have had no progression, no relapses and almost no change on my mri - would that be the case if I wasn’t taking it?
Who knows, I suspect that it wouldn’t be but will never know for sure
Yes and tecfidera seems quite good at cutting the relapse rate. I just have to overcome the fear of side effects! At least it’s a pill and not a needle…
Many thanks Squiffy gonna email the ms nurse now your right mate ty
Im close to dmd. I read the stories and thoughts and 3 years on wonder how things have been for any of you and your opinions now? As now some of these drugs are well used and not so new
I understand this is a very old thread.
but I’m also thinking about the effectiveness of DMT’s after 2 years on Tecfidera. Being switched to a stronger drug soon.
I have posted this question in new discussions too, just waiting to hear everyone’s experience.
Goodness, all these years and I’ve stumbled across my own old post dug up. I did go on tecfidera and it was a brilliant choice! No side effects. I was on it till i was moved to mavenclad last year. It’s all been a good choice and I’m still a mild case Katy
Hi Katy, so good to see your after! I was diagnosed last year RRMS, my oddities I now know are symptoms remain relatively mild. My MS consultant has been pushing for me to take Cladrabine, I’ve been reluctant worried about the impact of side effects on my quality of life, being a single working mum etc. Have decided to go for it, after a long delay due to COVID. Praying my after is as positive as yours