Last reply 1 month ago
Hello All

Good morning all,
My name is Laura and I’m 30 years old. This morning I’m sitting waiting to take my first Tecfidera tablet which was delivered yesterday. I genuinely thought I just had damaged nerves in my back from pushing myself at an exercise class, falling over as my leg stopped working and not being able to walk the next day or most of the next week but it seemed to sort itself out and I was back to normal. Fast forward to a year or so later I find I cannot walk any great length without my leg start to drag as I’m walking and at Christmas last year I had a ‘drink’ fuzzy feeling in my head and could not focus out my left eye for a few weeks. Was sent for an MRI in Jan this year and subsequently diagnosed with RRMS over a video call with my neurologist on the Thursday we went into lockdown. To say it was a shock would be an understatement and dealing with this diagnosis has been tough in these times. I have to say although I’ve never met my MS Consultant and MS nurse in person they have been great at calling me throughout this to make sure I’m feeling ok.

Anyways, I’ve rabbled enough now, just thought I’d say hello! Off to take my first Tec and hope the side affects are kind to me! X

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vixen
1 month ago

Hello @laura_martin and welcome to Shift! You posted 2 hours ag so you might be experiencing a weird flush right now! I’ve been on Tec for three years, no problems and no no lesions. Wow, what a bad time to be diagnosed, poor you! At least the referral/DMD route hasn’t been delayed which is great. If you type ‘newly diagnosed’ into the search box you’ll see you aren’t aloe, there have been lots of newbies just recently. There are also lots of fellow-Scots too, so you’re in good company. Take care, and post any questions you have 🙂


blueeyes
1 month ago

Hi to echo Vixen you may be bright red by now! Don’t worry that’s totally normal. That settles down with time for most people, though you may need to tweak what food you take with your tablet.


underdog
1 month ago

Hi @ laura_martin

Just want to say good luck with the Tecfidera. I’ve been on it for around 5 years now with hardly any issues at all.
I ate my meal as normal but popped the pill in between 2 spoonfuls of yoghurt. The only times I really got a flush was when I first started taking it and also when I had a drop of white wine. Stick with it though, it will help to reduce any potential relapses.


watsoncraig
1 month ago

Hi @laura_martin We have a wee group (less than 12) here in Falkirk, we normally meet (wobble)once a month alternating between Saturday and Sunday for brunch and a blether and to shoot the 💩about anything. Next one is the 11th July (Next Saturday at 11am online and I will post more details later. We are a diverse group from all over and welcome all. We are not affiliated to anywhere and don’t focus on a specific topic. We have RRMS folk (with Tec experience)and like me folk with PPMS. There is no pressure for anything


laura_martin
1 month ago

Hi @vixen thank you for the advice, I’ll take a look at the newly diagnosed area! That’s great news you’ve had no new lesions, a positive in amongst all this I bet.

Thanks @blueeyes haven’t noticed myself being bright red but maybe a slight flush…I’ll keep my fingers crossed it stays that way.

Thank you @underdog I felt it was the easiest of my DMD options to fit in with my life and hearing you’ve been on it 5 years with little issues is a comfort although I’m aware it can affect
everyone differently.

@watsoncraig that sounds like a lovely idea. I’d love to be a part of that. I’ll look out for details when you post them 😊


itsmewithms
1 month ago

hi from another Laura – but in the US ;-0 The first MS symptoms I now realize I had was after particularly grueling kick boxing sessions. Within days I had issues lifting one of my legs and was stumbling running up stairs and a couple of times when I told my leg to lift up and move out of the car it just didn’t move! say what!?

A couple of years later and my foot sticks out funny one morning and just won’t go straight for a week so I was sent in to a Neuro and for an MRI. It showed lesions and I was Dx (2005). There wasn’t much for treatment then but Copaxone had just been approved and I was put on that. I was on that for years and then Rebif and am now on Ocrevus. Treatments are improving 😉 but never tried Tecfidera.

This group is a good one with great information and support. The MS Societies also put out dependable information as well as Barts and I’ve learned a lot from Dr Boster’s site. This is his message to the newly diagnosed but he had hundreds of videos out there on many topics that you may find of interest https://www.youtube.com/watch?v=wvQXygHtYzc&t=24s

Good luck and welcome-


tania_pilz
1 month ago

Hello! I saw your comment earlier on my post and I just wanted to let you know that you are not alone as an MS Newby starting Tecfidera. I got my diagnosis right in the middle of the lockdown. I chose Tecfidera because I thought it would adjust the most to my working schedule and lifestyle. So far so good, I only had complaints during the first month, I am now on my second or third? I don’t even remember anymore!

I am so grateful to have found Shift MS, especially being recently diagnosed and not knowing what to expect. Hopefully, you find the support you need right now just like I did! Good luck on this journey!


thorpee
1 month ago

Hi @laura_martin I started with tecfidera the other day. All I can say after my whopping three days experience is that it makes yer face hot 😂.
I felt it worse today and more in my scalp too but it’s not too bad at all.


kcochrane-85
1 month ago

Hi @laura_martin I was just diagnosed in May and am still quite shocked and have been struggling. I was told that I have extensive lesions in my brain and spinal cord. I am waiting to speak to the neurologist about what medication I can go on but had thought tecfidera sounded the most suitable for me. I really hope I can go on it as I have heard a lot of positive reports about it.


kcochrane-85
1 month ago

@watsoncraig hi I live in Dunfermline, Fife and was diagnosed in May. I would be keen to meet up too. Thanks


watsoncraig
1 month ago

@kcochrane-85 you are more than welcome, we have had folk join us from Edinburgh, Brighton and Spain.


laura_martin
1 month ago

Hi @itsmewithms thank you 😊 I will take a look at Dr Boster’s youtube channel! It’s such a weird feeling when body parts no longer work the way they once did!

Hey @tania_pilz it’s definitely a comfort knowing there are a lot of us out there going through similar feelings/experiences although everyone’s journey with MS will be different!

Hi @thorpee that’s me now 3 days in and I have to say I haven’t felt much different at all (very, very slight flushing) Hopefully it continues this way, maybe when I’m on the full dose in 10 days or so I’ll feel more. Hope your face feels less hot as the days go on!

Hi @kcochrane-85 I felt the exact same way you do and still do at times. It will take time to get used to and as other have said, this site seems to be a great platform to be able to say what you want to say or ask anything you need to. I hope you are able to see your neurologist soon and get a treatment path drawn out for you. Take care 🙂

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