Choosing not to have DMTs?

Hello

I was wondering if anyone has chosen not to try any DMTs after considering all the possible side effects and the impact they could potentially have on your everyday life?

From the research it seems that even the mildest of DMTs can cause side effects which, on paper, appear worse than the MS itself. A lot of these would seem to interfere with normal everyday life, I appreciate that life may not now go back to normal as it was before I had my first relapse however I am considering how my everyday life was before this relapse when considering DMTs.

To put it in context, I am 26 years old and have experienced 2 separate disabling relapses in the past 6 months, however have made a near full recovery from both. This first relapse was the first time I have experienced any sort of MS symptoms or been unwell at all. This has led to a diagnosis of MS and I am now considering the DMTs available to me. Because of coronavirus lockdown and being furloughed, the impact on my day to day life has not been so huge as it would have been if we were not in the middle of lockdown. However before all this I was a social and happy 26 year old, with a career that I enjoyed and worked hard at and these relapses have obviously changed all of this.

I would be interested to hear if anyone else has thought the same, especially if they are of similar age to me, and what conclusions they came to.

I’d really appreciate any insight into this that anyone has.

Thanks very much

Hi

I was the same age as you when I was diagnosed. Although things weren’t too bad at first, the relapses soon started coming thick and fast. So I wish I started on DMTs a lot sooner than I did, as they may well have helped slow things down.

I know the list of side effects look bad, but they only affect the minority of people. And as far as I’m concerned, the side effects are preferable to potentially lasting damage caused by a relapse. So my recommendation is to start, as I think it’s a big risk to not take anything. But it’s important to remember that if you don’t get on well with one, you can always swap. The first one I started did make me feel pretty rough, so I swapped to Rebif, which was great. It really slowed relapses down. I’d feel a little rough in the morning after, but nothing some ibuprofen couldn’t quickly sort. After a few years I switched to Tysabri, which had no side effects other than being tired on infusion day. Now I’m on Tecfidera, which just leaves me with an occasionally runny nose, and sometimes a little nauseous a few hours after breakfast, but that quickly goes with a handful of nuts.Apart from the very first one, none of these have had side effects that had much impact on my day-to-day life.

Hope that helps :slight_smile:

Dan

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keep things in perspective - you’ve recovered from two relapses so things haven’t changed too much for you - although lurking in the back of your mind will be the thought that the m.s. will strike again.

You need to read up about all the different drugs available and get yourself on one - they’re not a cure but will slow things down.

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I’ve been on Tec for 22 months or so with no side effects at all. It’s all about risk v reward but on balance I’d say it’s safer to be on one. Cracowian is right, do some homework and make an educated choice.

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Hi, as I have PPMS, there`s never been anything on offer. Ocrevus is now offeed, but too late for me.

Now lots and lots of folk here say they have tried/been on various DMTs and are doing well.

But to be honest, when I read some horror stories of what the side effects can do, I dont think I`d take the risk.

But dont let me put you off…just saying to be cautious chuck.

Boudsx

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I considered the possible side effects of DMDs many years ago. I then considered the possible effects of not using them and got on them as soon as I could.

Don’t underestimate MS. It doesn’t go away, at best you will stay as well as you are now but a quick browse around the message boards will show you how unlikely that is. You’ve already had a couple of nasty relapse, take them as a warning.

I’ve been on Betaferon for about 15 years, now on Tecfidera with no side effects at all and am still grateful for the opportunity to have these meds to reduce the frequency and severity of relapses. Think carefully about what this horrible condition has the potential to do to you and your life style and none of it is good news.

Good luck with whatever you decide to do.

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I’m on the fence with this one. I’m twice as old as you, have had MS for more than 40 years now, but was only diagnosed last fall. Like Bouds, it’s pretty much too late for me, although they did try me on Ocrevus. I’ve only recently gotten bad enough to be classified as disabled, but the MS has seriously affected my life for more than 20 years. I seem to be one of those odd ones who only gets serious attacks every 3-4 years.

I’m undergoing further testing before my neuro will agree to let me drop the DMT’s altogether, although he was clear from the beginning that the Ocrevus would be a longshot for me. I had enough nuisance complications that I’m not interested in going through it all again, but I can’t help but wonder how I’d be if I’d gotten a diagnosis 20+ years ago and started a DMT then.

I’m still ambulatory, but I only have about 2 hours a day when I can do anything productive, and that includes showering, cooking meals, and just getting dressed. It’s a hard decision to make, but think carefully about your choices. It’s going to be a gamble either way.

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Hello

It’s a conundrum - a question of what might happen if you do and what if you don’t, take a DMD. You will never know whether you’ve made the right choice. All you can do is read up on the various drugs, think about the benefits versus the possible costs (reduction of number & severity of relapses versus side effects).

Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid while considering.

The MS professionals generally believe everyone is better off with a DMD. I tend to agree, as do most of the other people who’ve answered your post. But, it is still your choice, and at the age of 26 it must be like choosing between side effects and ordinary life. You’ve certainly been lucky so far with relapse recovery. The big problem is that sometimes a relapse hits with an absolute wallop and recovery isn’t complete.

My DMD history is very mixed. I had my first MS relapse 23 years ago when I was 30. At that time there were no DMD’s available, so I first started a drug (Avonex) in 2002 - which was the year they first became generally available. Unfortunately, I had bad cognitive side effects so came off it, after a few months (once I figured out that it was the drug making me so stupid and managed to explain to my neurologist). I then started Copaxone. This worked well for about 5 years, with no side effects at all. Then I started relapsing again. It took quite a while to start another DMD for one reason or another, and in the meantime, I had a very nasty relapse in 2012.

This put me in hospital, then a rehab unit. I haven’t been able to walk properly ever since.

I started Tysabri, but after a few months it became clear that I had hepatitis as a side effect from the drug. Then I tried Tecfidera but had Lymphopenia (depleted lymphocytes - a type of white blood cell) from that.

It was decided that my MS had become progressive so didn’t worry about any other DMD’s. Until I had a clear relapse, then another, from which I had complete remission (even though by this time I was significantly disabled). So it was decided that I’d try Copaxone again. This time, I did get side effects - bad injection site reactions.

I called it quits. No more DMDs for me, regardless of what happens now.

So, you might think that after trying 4 different DMDs and having bad side effects from all of them (although Copaxone was fine the first time round), I’d be someone telling you to beware of DMDs. But I’m not, quite the reverse.

I have had very bad luck with my history of side effects, to have had such bad side effects from so many drugs is I believe unusual.

But, I am significantly disabled. Had I started a good drug (and there are some wonderful drugs available now), I might not be a full time wheelchair user. Being this disabled has caused me further problems that I might not have encountered were I more able bodied. For example, I had an accident (fell out of my 'chair) and broke my femur almost a year ago. Since then, I’ve had trouble even standing, let alone walking at all, regardless of aids. I also now have osteopenia (forerunner to osteoporosis) because of my immobility. So I could break further bones - I’m having to take a bone protective drug as a result.

I take lots of drugs to counter my physical problems. I had a colostomy 3 years ago due to bowel problems, caused by MS, and I use intermittent self catheterisation as I can’t wee on demand.

I believe that had I been able to take one of the newer drugs from the outset, and been fortunate enough to respond well and not have side effects, I wouldn’t have had the relapses that I have over my 23 years of living with the MS beast (almost 24 now!) I might not be this disabled. I might be able to walk, even if I needed a stick or a crutch. My bowel and bladder problems might be lessened. I might have fewer ongoing spasms and neuropathic pain so take less drugs.

My feeling is that you owe it to yourself to do all you can to reduce relapses and the severity of relapses. You’ve been lucky enough so far to have good remission, but that could change. My advice would be to consider seriously taking a DMD.

If however, you decide not to take a drug right now (and let’s face it, you can change your mind later!), the best advice I would offer is to get yourself as fit physically as you can. Get as strong a core as possible. Make your body your own defence against MS. Have your vitamins D and B tested by your GP and take supplements as advised by your neurologist. (Most recommend high dose vitamin D at the very least, and possibly B12 too.)

Eat well, try not to drink too much or smoke. Get enough sleep. If you get fatigued, rest properly. Consider taking a drug for fatigue if you begin suffering (Modafinil if you can get it prescribed, although that can be difficult, otherwise Amantadine). If you need to, use aids as recommended by an occupational therapist. See a physiotherapist and get an exercise plan worked out.

Keep in your mind that it is your decision, not your neurologist nor your MS nurses choice as to whether you should take a drug and which one, if you decide to take a DMD.

Best of luck.

Sue

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Great post Sue.

All the evidence suggests that the earlier you start a DMT, the better the outcome. I took this from page 32 of https://www.msbrainhealth.org/perch/resources/brain-health-time-matters-in-multiple-sclerosis-policy-report.pdf

“Further evidence that DMTs are most effective early in the disease course is provided by a recent meta-analysis of published randomized clinical trials in RRMS. This showed that DMTs are more effective at slowing disability progression from MS in younger people than in older people; they also reduce the relapse rate most effectively in younger people (rather than older people), in patients with low EDSS scores (rather than high scores) and in those with active lesions (i.e. lesions that are currently inflamed) rather than no active lesions.”

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Thank you to all of you who have taken the time to reply. You have given me a lot to think about and as you all say, I need to do a lot more research.

I am finding the whole thing very overwhelming, less than 6 months ago I didn’t even know what MS was and was perfectly healthy, but 4 out of the past 5 months I have been physically disabled and had to stop living on my own and move back to my parents as a result. Now faced with this huge and life changing decision, I am finding it an awful lot to process in such a small amount of time!

I really appreciate the advice and experiences you have all shared with me.

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Very good post Sue. Good luck with your decision. Anne

I am very sorry that MS has barged into your life, uninvited, and with such violence. That’s a horrible shock to the system as I and most of us remember well, however long ago it was (20+ years in my case, and my RRMS was very active from the start as well). Your story brings all those memories back, and I really feel for you.

Of course you want it to go away, and of course you want to take back a bit of control in a life that suddenly is being jerked around by fate and doctors. Of course you are tempted to tell them all to sod off. But MS is here to stay, unfortunately.

Maybe rather than think of DMDs as something that ‘they’ are wanting to do to you, you can reframe them in your mind as a free and positive choice that you are making to help you stay as well as you can for as long as you can. And it is exactly that, of course, alongside all the many other things you can do to steer your own ship in a healthy direction: healthy eating, healthy exercise, good self-care regime covering sleep, relaxation, all that. It’s all important, and these are all your decisions to make.

That has been my own approach for the past 20 years, and it has worked out OK for me so far (Avonex for 10 years, and now Tysabri, 10 years and counting).

Please give yourself the best chance. Your MS has already given you a hint of what it can do. Please do what you can to get on top of it, so you can life your best life.

.

Good luck.

Alison

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I was 39 when I was diagnosed and like you had 2 relapses within 6 months (hospitalised both times) and I completely recovered afterwards.
I felt being young at heart, active and having a busy family/work balance, eating a healthy balanced diet and having a positive mental attitude I would be able to beat it - MS that is. I wasn’t offered drugs at the time but was diagnosed with RRMS and was told to wait for my next relapse (that was how MS was treated back in 2005).

Fortunately, I was mostly unaffected for the next 9 years, except for a bit of numbness and pins an needles, but then I had a relapse - just a small one of vertigo to start with but this was followed with spasms affecting the whole right side including my speech. It was about this time that I became aware of a possible link with low Vitamin D levels and relapses in MS. I pushed for a blood test which came back positive for low levels.

My GP prescribed a mega dose for 12 weeks and I contacted the MS team to have IV fluids to help shorten the relapse. It was then I decided to take the bull by the horns and decided it was time for me to start taking DMDs.

I started with Tecfidera, but it didn’t work out. After 12 months I switched to Aubagio 5 years ago, which has worked out very well for me. No more lesions and still very active at the age of almost 55 with mostly minor symptoms of numbness and tingling. My osteoarthritis is causing more problems lately!

I would consider all your options and listen to the advise on offer.

Good luck with your decisions.

Sharon