lacemister 14/07/18
Last reply 4 hours ago
Lemedra or Tecfidera

At last after 5 months waiting, yesterday I met with a Dr at Addenbrookrs.
The day was incredible. I was fully expecting to be told to come back in 6 months and “we will wait and see how you get on”. The Dr was thorough, kind and caring I was open mouthed when it became clear that they were proposing to treat me, I felt like I mattered .
I was told of 2 treatment options Tecfidera or Lemtrada . That is my choice so I am researching both reading all the posts by you guys . At least I have a treatment choice to make I am excited.
I also met with an ms nurse who is just amazing. Addenbrookes what a place 👍

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lightning87
3 days ago

That’s brilliant you had such a positive experience!

My MS nurse mentioned Tecfidera to me but the more I read about Lemedera the more I wonder if I should push for this. Although at least you can always change your meds if one doesn’t work for you.

X


stumbler
3 days ago

@lacemister , it’s always encouraging to have a good experience.

Here’s a brochure from the MS Trust, which might help your research :-

https://support.mstrust.org.uk/file/store-pdfs/MS-Decisions-ALL.pdf


mlgilber1
3 days ago

Hey! I went on Tecfidera for awhile (only a month) when I started doing significantly worse. My neurologist had me go to the er and after I was admitted. New MRIs showed new lesions everywhere and one that was 3 times bigger than the usual ms lesion. I’ve stopped Tecfidera so I could try lemtrada just waiting to the specialist. Ultimately the choice is yours. I read a lot about both and both have bad risks and side effects, but there were positive outcomes from lemtrada. I was going to ask my doc to switch me before I even started doing worse anyways. Good luck on whichever you decide to go with! Best wishes!


lacemister
3 days ago

Thanks for the reply and good luck with everything sounds like you have a battle on. Take care !!


twinmummy
2 days ago

I found the MS trust and MS society information really helpful in deciding between those two options. The charities give you the evidence behind the drugs plus the pros and cons. My MS nurse sent m the drug company information and that is like a sales brochure for a high end motor. Very glossy, lots of nice pictures but you know ultimately they are just trying to sell you something. Good luck-make the right decision for you right now. Life changes so you can always change your mind.


lacemister
2 days ago

Thanks for replying to my post really appreciate it


mikeyb
1 day ago

I am 2 years post round 2 of lem and feel amazing gone from not being able to walk up the stairs to runny my first 10k this year. There are pros and cons to every DMT but lemtrada has worked amazingly for me. Hope your feeling ok it’s a hard decision when choosing DMTs


lacemister
1 day ago

Thanks Micky I really appreciate your message . Every DMT seems to be a little tricky. I like the idea of being in hospital ….in my case Addenbrookea so they can react to any issues. Thanks and glad it’s been so positive for you !


vixen
21 hours ago

Hi @lacemister, well, you can’t put a price on feeling looked after and valued. It’s good that you are recommended two distinct options. My hospital wouldn’t be drawn at all on any particular choices which made it hard. For me, it came down to what fitted in with lifestyle, which in my case was Tecfidera. But for some, that can be a nightmare. And yes, whichever you choose, you’re not tied in permanently. As with MS, no two experiences with DMDs are alike. But hey, at least we have DMDs at all, so there’s much to celebrate compared with 20 years ago. All the best!


birdboy
14 hours ago

I’ve been on Techfidera for 6 weeks having been recently diagnosed. First few weeks were a little difficult and week 3 was hellish (stomach cramps like nothing I’ve ever experienced), but things are much better now. Take care he tablet twice a day with food and a Buscopan (get this over the counter or from GP) and for the most part things are ok. Hope this helps 😁


highheeledfagin
8 hours ago

I’m 2 months post Round 2 of Lemtrada and still feeling confident that I made the right decision. It wasn’t an easy ride but it’s the first time in 15 years that I’ve really felt like I am going to win this fight.


lacemister
7 hours ago

Hi thanks all for posting on my choice it’s invaluable.

I am in a great position at work as my bosses two brothers have employed me for 31 years . They are like my brothers and just so supportive, concerned and want me to be as well as I can be .
The heat here dare I say it is causing me some slight problems in what feels like exaggerated symptoms ? .
Thanks everyone


grandma
4 hours ago

I chose Tecfidera in January this year. 23 years on Avonex, but when I was given that there was no choice like there is now. Was on the original trial for Avonex, and when NICE said yes, part way through the trial, we all celebrated. It’s purpose was to reduce relapses by a third which it certainly did for me for all those years so no complaints. The Tecfidera us supposed to keep the beast at bay and I usually relapse at least twice a year and we’re in the middle of July and no signs so far and I can cope with a tablet rwice a day after 23 years of needles! Good luck with whatever you decide😍

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