Last reply 9 months ago
Am I crazy……?

To be considering starting a DMT when my MS is currently really stable and I feel well?

I’ve had 1 relapse in 5 years which I have fully recovered from. I’ve always been pro treatment and always said I would start a DMT as soon as I could because everything I’ve read says the earlier the better. I never felt that not starting treatment was an option for me. But I have an appointment today, I have to make a decision about which DMT I’m going to start on and I’m suddenly panicking that the side effects of the drugs are going to make me feel more ill than the actual MS and that it won’t be worth it!

Reassurance please that starting a DMT at this point is the right thing to do!!

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9 months ago

Hi I am going through the exact same dilemma at the moment. My relapses were every four years from when I was diagnosed back in 2007. I didn’t want to take anything for the exact same reason but since I had my daughter in 2017 I had two relapses in quick succession. Then earlier this year when I was 3 months pregnant with my son I had a relapse and now that he is 6 weeks old I think I’m having another relapses. I feel my MS is progressing and that I should at least give one a go. I’m nervous thought and don’t know what the right thing to do is. I tried copaxone last year but only lasted 3 weeks because I couldn’t handle self injecting. I haven’t ruled out wanting one more baby but I’m going to try Tecfidera for a while and see if the benefits out way the side effects. Basically I want the best quality of life. Just go with your gut, that’s all you can do, no of us know what the future holds and I think that’s the hardest thing about having MS xx

9 months ago

@robean @lpoollou2
I was just diagnosed this year & started on a DMT immediately. The reason, I’m 50 years old and I remember people from my childhood that had MS before many of today’s treatment options. It was so sad to see the devastation that was caused by MS: wheelchair and seemingly totally spaced out with “cog fog” and exhaustion. I feel so fortunate to have options that my beautiful friends did not have many years ago. I feel blessed to have DMT options. I totally understand the weight of your decision, as all DMTs and medications have potential side effects. Good luck with your health & treatment options. Godspeed!

9 months ago

I was put on copaxone immediately after diagnosis 15 years ago and was on that until a few years ago was switched up to rebif. I had 3 or 4 relapses in my 11 years on Copaxone with what I thought were full recoveries. No relapses while on Rebif. Not sure if that is because it is “better” or that I was on the path to SPMS where you no longer have big relapse events but a slow slide.

That is where they think I am so am being evaluated for Ocrevus. That is sounding pretty promising from the comments on this site. We’ll see…

9 months ago

it was the biggest mistake in my life to start Rebef after 5 yrs of daignosis
when my MS was 100% stable
it was getting much worse with it i remember neurologists looks when he saw mri result each year with rebef i got repeated relapses.

9 months ago

I am 43 and started on Tecfidera a few months ago. I had only minor symptoms but as I’ve got two school age children and “life plans” jumped at the chance at treatment. To me MS is such an unpredictable illness I’m not taking chances. I found the side affects to be a bit of flushing around my neck but that’s all, I really improved my diet beforehand however as I knew the drug could affect me that way.

9 months ago

Crazy not to may be the take of some.

Soliciting personal opinion on a forum is well and good. However, for a medical take on this, which is actually what you need.

The consensus these days is that MS may appear ‘stable’ but that moniker is considered misleading. As is the reliance on NEDA. The view that is being held by the real S experts is that there is no such thing as stable MS. MS smoulders away in the background regardless.

There is extremely robust data that supports intervening as soon as possible with the most effective treatments. The success rate is measured in terms of delaying time to wheelchair.

The question ought to be, what is a good clinical reason not to intervene as soon as possible and as efficaciously as possible?

9 months ago

It’s all well and good saying it’s the best thing to do clinically but it’s a huge decision and it’s a scary one. People just want to see what other people’s experience is. It is naive to think that doctors don’t get things wrong, they are human after all. We just have to make the best decision we can at the time with the information we have xxx

9 months ago

I’d say a forum gets things wrong more often than a Dr and the researches 😉 yet my husband (a research scientist who has studied his autoimmune affliction (UC) extensively) points out that many of these drugs we are prescribed can only be proven to help like 1 person in 15. I don’t know where that comes from as my Dr definitely encourages use to which my husband replies that they are all “tied in” with the drug companies…like it is a big conspiracy theory. I think that is mostly rubbish and ask him if he wants me to play roulette with my life and he ends up having to feed me and catching my dribbles. Then he says to take my meds.

He also thinks that eating more kale is what it will take though…perhaps he read only that chapter of Terry W ahl’s blog and not the part about electrical muscle stimulation or chemo (Novantrone).

So – I trust science, expect myself to do the best I can to help my situation and encourage others to make informed decisions to their betterment. I know you won’t do it lightly.

9 months ago

The truth is that you’ll never know. The drugs do nothing for past damage so once you’re on them the chances are you’ll feel exactly the same as you do without them – at least in the short term. Making a long-term decision about anything, whether it’s planning your finances or your career path, is rarely straightforward. Factor in the variability of MS and it’s even less so……. except it’s not really. It is undisputed that once diagnosed, MS is already doing things within your body, much of it unseen. Have you seen the analogy of the MS iceberg? A tiny part is visible, but the damage that will wreck the ship so to speak, is under the water. Deciding against a DMT is not the same as deciding it’s not worth taking out expensive life insurance because the likelihood is you won’t fall under a bus or whatever…. with MS, no-one can predict exactly where or how badly you’ll be affected in the future, just that you will be – one way or another. The ‘game’ is to slow it all down, so that your life both now and in the future will be minimally affected. I was diagnosed in 2003, age 53. I’m now nearly seventy and am still managing without a stick. If I need one in the future, there’ll be plenty people without MS as lame as me!

9 months ago

Thank you everyone. Just a last minute wobble about whether I was doing the right thing! I have done a lot of research and I know that all the evidence suggests early treatment is the best. I am a nurse myself and have 100% confidence in science and modern medicine! It’s just different when you’re actually the patient reading a list of scary side effects and thinking about your future, especially when I don’t feel like anything is particularly wrong at the moment! I have to remind myself of the unpredictability of this disease and how scary my last relapse was (and it was minor compared to some!) I’ve never taken anything more than paracetamol and the occasional course of antibiotics so it’s a big lifestyle change for me to suddenly find myself on regular medication, probabaly for the forseeable future!

I have decided to start Tecfidera. Fingers crossed the benefits outweigh the risks and side effects are minimal!

Thanks again for your input 🙂

9 months ago

It is the long term, which is difficult to get your head around when the present seems benign.

You have to trust the large scale long term data. Anything and everything else is anecdotal.

Individuals – all of us – simply cannot help but filter through our own behavioural biases.

The data is pretty unequivocal regarding treating fast and effectively.

The MS Academy topics in Birmingham a few months ago, the ECTRIMS debates and the thought leaders like Boster, Giovanni etc are the people to watch and readThe Bart’s MS Blog is a source of great research and discussion.

I took Tec for 7y. You will almost undoubtedly feel some side effects as most do. They are entirely manageable and when you get them remind yourself of the long-term good you are doing!

Good luck.

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