beefree 23/03/18
Last reply 3 weeks ago
Tecfidera v Lemtrada

Hi

I’m due to start Tecfidera in the next couple of weeks, but wonder whether I should be going at MS harder by starting with Lemtrada.

My neurologist is brilliant. I have absolute confidence in him. While I felt drawn to Lemtrada because of its higher effectiveness and the need to only take it annually, my neurologist didn’t encourage me towards that option. My impression was that he didn’t think the additional risk was necessary at this stage. But I’m starting to think that I’d rather take the risk of side effects than of relapses. I wonder whether I’m making a mistake not going for it with Lemtrada, and whether it’s too late now to change my mind. My Tecfidera has been ordered and is due to be delivered next week.

Has anyone else with RRMS started with Lemtrada straight away? Was the decision based on the severity of lesion load or evidence of early or frequent relapses? What did your neurologist advise?

I’d welcome hearing from anyone with related advice.

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grandma
1 month ago

I started on Tecfidera 12 weeks ago after 23 years on Beta Inferon, but when I started on that there was no choice so at least you have that these days! Seriously though all today’s dmt’s are designed to hit ms hard and fast. Only you can decide, but isn’t it better to keep something back just in case? <Edited> As a rule your ms nurse and dr know what they’re talking about, but find out all you can. I have only had minor side effects in the first couple of weeks but we are all so different.😍


aabreu
1 month ago

I was on tecfidera. Side effects were not worth mentioning. It didn’t help me.

For me, if I really had a choice, I wish I did things differently. But everyone is different.
Tysabri is a very effective. JC virus is the only limitation.
Ocrevus is almost as good and is only needed once every 6 months.
Cladribine if you can get it. Not approved in USA.
Lemtrada puts many into long term remission. But you may end up taking a pill every day for your thyroid. Small price to pay I think.
None of these options were offered.
I’m bitter about it.


californiadreamin
1 month ago

It’s the question everyone with ms wonders so you are not alone. Are those the only two options you have? If you are jcv- consider tysabri for a couple years. Or if ocrevus is available that’s another strong dmt. My wife is on Tecfidera since she was diagnosed for the last 1.5 years and we always wonder should she try something stronger. When there doesn’t appear to be any worsening it’s hard to feel like changing it up.

The main concern with lemtrada for me is the secondary auto immunity. It impacts about 10% of the people.


marcyg921
1 month ago

I went on Lemtrada straight away after diagnosis. The reason my Neurologist put me on that treatment was due to the amount of relapses I had and basing it off of my test results. I did ask him about other treatments and he did say he could put me on a treatment that wasn’t as strong but he didn’t feel it would be worth it. Now I don’t know much about tecfidera so I can’t compare the treatment but if your Neurologist feels that that is the treatment for you then I would listen to him but you should really think about this, have a look at both treatments again and if you decide you want Lemtrada then discuss it with Neurologist.


tamiem
1 month ago

I am with Tecfidera since 2 years ago. I didn’t have any symthoms, only sometimes the skin is red for 15 minutes.
I’m vegan and I don’t know if it was the reason cos I never had problems with the stomach and the pill.
Ask me all the things you want 🙂

Tam


rambles
1 month ago

Hi @beefree. I have been in Tecfidera but it hasn’t worked for me unfortunately so am now likely to change to Lemtrada. Tecfidera is generally classed as first line and Lemtrada second line. In my case it seemed to be you had to be on something like Tecfidera (first line) and have it not work before being considered for the likes of Lemtrada. Tecfidera wasn’t a problem side effects-wise for me – just didn’t work. However, there are many people stable on it that I know of. I had, perhaps, a more major episode than those I know who are in this category but it does seem to be that some DMTs are better/more effective for us than others and this may not always be to do with whether they are first or second line. Hope whatever you choose it suits you well. ☺ xx


stumbler
1 month ago

@beefree , you need to read our @tracyd ‘s blog, who decided to hit her MS hard and fast :-

http://tracyslemtradajourney.blogspot.co.uk/


lilbird
1 month ago

Hi there @beefree

I decided on Lemtrada as my first treatment. I developed a large spinal lesion which led to a fairly dramatic relapse and ultimately my diagnoses, I did a lot of reading about ms and about treatments. At first Lem seemed far too scary to consider but the more I learned about the potential effects of ms and how scary they could be the clearer it became that it was my only real choice (obviously only my opinion) My thought was that by not taking it I’d be risking more severe ms related damage. The “time is brain” theory really struck a chord too.

I think I’m correct in saying that the earlier you take Lem the more effective it is likely to be so if you think its something you might come back to eventually at some point anyway then maybe sooner is better than later? 🤔

I’ve tried to keep this short and simple so as not to overload you with info but if you want to ask me anything specific or if you do want more detail feel free to ask away 😊 I’d also definitely recommend you read @tracyd ‘s blog I know it helped me a lot and was a big part of my decision making process. In fact I hope I’ve said it before but incase I haven’t, thank you @tracyd it was invaluable to have your insight from the frontline!


tracyd
4 weeks ago

@lilbird
Thanks for the lovely words it means a lot I wanted to document it all and hopefully help others understand what it was like for me from a ‘life’ point of view not just the medical stuff.
It means a lot to hear it’s helped xxx


beefree
4 weeks ago

Thanks everyone, for your helpful thoughts and inputs. I’m going to touch base with my MS nurse to discuss this with her and the neurologist. I too believe that time is brain, and on this basis have fairly high risk tolerance. I’m going to do some more research on the serious side effects beyond thyroid autoimmunity, before seeing what my neurologist thinks.

Thanks again. x


sciencegeek
4 weeks ago

Definitely read up on Mavenclad too, if you are eligible. It’s not as risky as Lemtrada but it is almost as effective.

However, as it hasn’t been licensed for long, there is less long-term follow up information about Mavenclad than about Lemtrada.


beefree
3 weeks ago

Hi everyone,

After advice from my neurologist and MS nurse, I’m going to start with Tecfidera.

Both understood why I wanted to explore Lemtrada, and advocated that it is a highly effective treatment, but given that I just about qualified for an MS diagnosis, after my follow up MRI showed no lesions, they feel that with Tecfidera I’m already going hard at MS. I’m part of the FUTURE-MS observation study, which means I’ll have three MRI’s over the course of the next 12 months, which we’re going to use as an opportunity to review the treatment choice if needed.

I’m glad I explored Lemtrada fully, and happier about starting treatment knowing that all options have been thoroughly considered and a sound decision taken based on my circumstances, with the option for future change.

@sciencegeek thanks for flagging Mavenclad, which I wasn’t aware of. I’m based in Scotland where it hasn’t yet been licensed but my MS team said this might be something to come back to when it is available up here.

Thanks again for the helpful advice.


stumbler
3 weeks ago

@beefree , it’s good that you were able to participate in the discussion on treatment choice.

This is so much better than just being told what you’re going to take. 😉

Good luck with it.

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