Last reply 2 months ago
Newly diagnosed with RRMS

Just thought I’d say hi and give a bit of background. I was diagnosed with CIS back in October 2016 at 49 years old after some very sudden numbness from my toes to my waist. Came as a huge surprise as I considered myself fit and healthyish, I had ran 10 miles the day before my symptoms started. Fast forward to Jan 29th 2019 and I got diagnoses with RRMS following numerous MRI scans over the two year (which showed numerous lesions on my brain and upper thoracic spine) and a lumbar puncture (which was clear). I’ve been given some meds to research and think about. Tecfidera, Lemtrada, Plegridy and capoxone. I know meds aren’t one size fits all but any feedback would be useful. Still getting my head around the diagnosis at times. Thanks. Steven.

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dominics
3 months ago

Gosh, a lot to deal with. I am 50 and have had it more than half my life now. OTOH, a friend was diagnosed recently. They thought it was SPMS but Dr Omar Malik in London things it is an especially odd kind. It falls nowhere in particular.! It freaked him out but he is engaging with the experts and already undergoing therapy.

People are very polarised about drugs, often with little evidence other than their confirmation bias – totally understandable – that they have chosen the right thing. No one likes to think they haven’t made the best choice, me included.

I would urge you to do your research regarding therapies and strategies. The current leadership thinking (the neurologists that are the field experts) is to hit it hard as soon as possible to mitigate further damage. Whatever anyone says about benign MS isn’t true. There is enough data and research – some ongoing – to show that however it manifests on MRI etc it is still harming you, regardless.

It is about your attitude to risk now, risk/reward calculations for the future and so on. Everyone seems to encounter the ill-informed helpers who all ‘knew someone with MS and have you tried XXX’ and so on. There are no cures, no alternative medicine that works on anything other than your mental health and lightening your wallet. If the so-called alternatives worked they wouldn’t be alternatives, they’d be medicine!

I swapped from 7y on Tecfidera to Ocrevus (Jan 2019) because I want to get on the most efficacious available as soon as possible. it is, apparently, better tolerated than Alemtuzumab and isn’t available for SPMS sadly. If you can get it now I’d give it thought. I’d also ask the neuro why they haven’t put that to you as another potential.

There is no firm link between MRI plaque (lesion) activity and physical manifestation of symptoms. MRI has lost its shine as a great, one-size-fits-all tool for tracking progressio0n. It is more part of the mix these days than a solo item. Beware the entirely MRI based feedback.

There are some excellent videos on here from the 2018 research meeting called ECTRIMS. The US version, ACTRIMS is going to take place in 2019.

Ask anything.

Best,

Dominic


stumbler
3 months ago

Hi @stevenh67 and welcome.

A very good answer from @dominics above.

Here’s some reading material for you about all the available Disease Modifying Therapies (DMTs) and a Decision Tool, which might help:-

https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid


stevenh67
3 months ago

Thanks @dominic and @stumbler, appreciate you taking the time to read and respond. I’ve been researching alot since diagnosis and I have a few weeks until I see the MS nurse so I just thought I’d ask if anyone had been on any of the meds and what their experience had been. I’ve spoken to other people with MS that I know too and had a good look at the MS trust website and decision tool. Thanks again. Steven.


grandma
3 months ago

Hi Steve, I’m 62, had the beast for 26 years, was on the very first DMT , Beta-Inferon when it came out. Stayed on it for 23 years, was changed to Tecfidera a year ago when things started to get worse. I had been totally on my feet for all those years so not complaining. Things have changed as I expected them to, but we are all so different, carry on doing your research, and remember, not everything is set in stone, if one DMT doesn’t seem to be working, or suiting you, in some cases you can change and try something else. Your Neuro and ms nurse will guide you through the labyrinth.🤞😜


mermaidia11
3 months ago

Hi Stephen67gosh it’s a minefield.? Time to get the big boys pants on eh?

I offer contemplation from the other side of the coin.

I’ve had MS since I was 20 and I am now 45, living independently with the later stages of the illness . In the days when I was diagnosed, they told me to not worry too much; a relapse may not happen again; to live my life to the full and do everything in moderation (there was no mention of any dmds to me and I have never taken one. I have never to this day, had another relapse like my first.. I’ve been secondary progressive for 6 years now

And there’s plenty out there like me. We are all going to go secondary progressive and anyone who tells you otherwise in in denial.

I am not sponsored by a drug company, I’m not a PR news feed; I have no billion dollar industry to sustain. It’s not in my best interests marketing treatments that transform patients into customers for life or to expand an immensely an profitable business model.

Find your own truth after careful consideration, don’t just look at the pharma and doctor( supplied to them by the pharma; )literature

Fear is a great motivator, don’t let it be yours and anyone who recommends otherwise, ain’t giving you the whole coin.


stevenh67
3 months ago

vixen
3 months ago

Hello @stevenh67, nice to say hello! Choosing meds is so hard, as they all have different stories, effects and efficacy with different people. And some people choose not to go the DMD route at all. It’s a totally personal choice. My choice of Tecfidera was routed in it not having too much impact on day to day living, and has worked well for me over the last two years. Being at the later end of the age range for diagnosis as you were, I felt that I didn’t have the luxury of time, and watch and wait, so I took the plunge. But the biggest changes for me have come through moderating lifestyle. diet, exercise, positive thinking, making achievable plans and short term goals. And I feel I’m doing OK, hope you do too 🙂


stevenh67
3 months ago

Thanks @vixen


stevenh67
2 months ago

Had my appointment with the MS nurse today and spoke through my options. Decided to go for Tecfidera from next month. Fingers crossed I manage to avoid any of the side effects. The next chapter and challenge is about to begin.


grandma
2 months ago

Glad you’ve made the decision @ stevenh67 . You will become eligible to join the sub- group with us Teccys. There wil be some side effects, but they are not insurmountable and forewarned is forearmed. Lots of Teccys here, with all sorts of ideas on aspirin, anti- histamine, etc., so ask away if you’ve got any questions when the time comes🥊😜👂


rmdaniels
2 months ago

@stevenh67
I was just diagnosed last month with RRMS & started on Tecfidera. So far so good. I’m still working through the emotions of it all. I want to cry but I want to be brave too. I think my husband is even more affected than me. The hard part is not knowing whether I will be able to keep up with my job/travel schedule. One thing my MS nurse insisted on was to take the starter dose (1/2 the regular dose) for 3 weeks before starting the full dose. I did fine with the full dose when I did as she suggested. Good luck to you!


lightning87
2 months ago

@stevenh67
It’s like a minefield when they say here’s the medications you can have, pick one. You expect doctors to tell you which medication is best. The problem is, they don’t know so you have to go with what feels right for you.

I started Tec 6 months ago. Very occasional flush but it goes within 10 mins. No side effects at all and I take mine in the morning without food (although not advisable!).

All the very best x


stevenh67
2 months ago

Thanks @grandma, @rmdaniels and @lightning87…for taking the time to read and comment.


highlander
2 months ago

@stevenh67
I get flushing occasionally but it soon goes.
Just in case, stock up on tissues my nose runs like a stream after about 2hrs from taking it.
Happy trails


stevenh67
2 months ago

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