Last reply 4 months ago
Tecfidera or Lemtrada? Your thoughts?

Hi all,

I was diagnosed with RMMS November last year and have been asked to decide between Tecfidera or Lemtrada. I wondered if anyone has any experience with either DMT? I am particularly concerned about the short term and long term side effects of Lemtrada (thyroid and liver problems). Also, keen to hear your experience with Tecfidera and whether the flushing and stomach issues are bothersome or not and whether you experience any other symptoms. I live quite an active lifestyle and feel that Lemtrada may slow me down compared to Tecfidera. I’ve also heard that in Berkshire and London the waiting list for Lemtrada is quite long as it is a preferred DMT. Any thoughts? 🙂

Thanks,
Gursh

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
5 months ago

@gp14 , you need to have a trawl through the previous posts on these two meds.

Use the Forum Search Function (magnifying glass, top left) and put in “Lemtrada” or “Tecfidera” as your search terms.

You can also read about these two meds here :-

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


gp14
5 months ago

@stumbler thank you, I will have a look at the below and also will search through as suggested 🙂


imbarca
5 months ago

Hi Gursh @gp14

I have had both. Tecfidera – I had no real side effects except for the flushing, which didn’t really bother me. Lemtrada is obviously more of an undertaking. I had thyroid issues before I started so that wasn’t an issue for me.

It really is a personal thing. Tecfidera is probably less effective than Lemtrada. Tecfidera is probably less risky than Lemtrada. But some people have done really well on Tecfidera, you might be one of them! Do you know what your risk factors for a good/poor prognosis are? Do want to?

I guess what I’m saying is that until we have personalised medicine, there really are no right answers. Good luck with your decision; whatever you choose will be your right answer.


world25
5 months ago

@gp14, I am in the same place at the moment trying to decide between the both, my consultant told me once Lemtrada was in your body you can’t get it out and people are coming in 4 years down the line with more problems and there are new and upcoming drugs.

I’ve decided to go for tecfideria see how it is and if it doesn’t work then I can go Lemtrada. I think Lemtrada is very risky and there may be something in a years time which is less threatening.

Hope this helps!


gp14
5 months ago

@imbarca Thanks for getting back to me. Yes and I know each treatment is different for everyone so there is no way to tell if I will 100% experience the symptoms other people have. Unsure the risks for me, it’s a good question I will ask my nurse 🙂


gp14
5 months ago

@world25 Yes this is exactly my concern at the moment, I feel there is a lot more progress so maybe there will be another drug in the future that can help. I’m also trying to avoid creating any long term problems caused by DMTs. I’m leaning towards Tecfideria even though it may not be as effective, have you started it yet?


world25
5 months ago

@gp14 yes I agree, I think in 2-5 years there will be something new which is as effective as Lemtrada but less side effects.
I haven’t started it just yet, I’m waiting for a lumbar puncture but hope to start in the next 3 months and see how it goes


gp14
5 months ago

@world25 Good luck with the lumbar puncture, I had one a few years back. I’ll let you know once I decide between the two 🙂


world25
5 months ago

@gp14 thank you! Are you able to let me know if it’s as bad as it’s sounds and the procedure im really nervous about having it done.

Yes let me know what you choose!


gp14
5 months ago

@world25 I’m not a fan of needles so was quite nervous too but the actual procedure was really quick and they numbed the area down. Afterwards they ask you to lie flat to avoid the LP headache so I kept busy on my phone watching netflix/videos until I could go home


stephz
5 months ago

@gp14 I started Tec in January this year after mulling the DMT options over – my neuros advice was that I should pick a DMT that suits my lifestyle! So I did because I travel a lot with work taking tablets made a lot more sense…make sure you take your lifestyle into account! Any issues pro/con you can also discuss with your MS nurse or neuro
Good luck with whatever DMT you decide


pikilily
5 months ago

I have used Tecfidera.. although I had to stop taking it due to an allergic response in my bloods. Having said that it was an easy drug to take. I was titrated up to full dose verrrrry slowly ( local protocol)..as in, from first dose to full dose was six weeks. That gave my body time to adjust at each increase. I found taking probiotics and eating natural yogurt helped the guts, as did little and often food. An aspirin before each dose meant that I only ever had one flush.
I hope this helps and bit.
Emma T x


gp14
5 months ago

@stephz thank you – I am definitely leaning towards Tec as it seems so easy to take, Lemtrada seems a little intense with a lot of side effects. Do you increase your water intake/food intake whilst on Tec?

@pikilily – so sorry to hear that, what DMT did they give you instead? I tend to eat a lot of greek yoghurt every week so I guess if I take Tec I should take it after a good meal.


aabreu
5 months ago

Tecfidera didn’t work. I was then offered Lemtrada or HSCT. I’m doing the HSCT.


stephz
5 months ago

@gp14 I didn’t increase water intake but I’ve been quite good with sticking to the recommended intake. Regarding food I eat porridge for breakfast and have a good dinner – I found that having lunch at the same time after breakfast limits flushing…I started taking starflower oil before as it’s supposed to help. When I started with Tec I had a peanut butter dessert to make sure I have enough protein/fats in the system This blog helped me prepare: https://dinosaursdonkeysandms.com/2017/11/22/tips-for-tecfidera/ and I got some good tips on Twitter from other MSers on Tec. I probably had 7-9 flushes since starting Tec – they last 1 hour and are now only happening when I don’t eat properly or am ill. I also was lucky and no bad 3rd week – every now and then my tummy is upset but nothing too bad.


leanne12
5 months ago

Last March I was diagnosed and went in hard for the fight and was given round 1 lemtrada June 2017. It went well I’ve had a good year and to top it off I had mri last week and got told those 3 magic words “no new lesions” looking forward to round 2 lemtrada 😊


gp14
5 months ago

@aabreu sorry to hear that the Tec didn’t work. I spoke with my nurse yesterday and I am even more in two minds what to do. I’ve not been offered that option, but I’ve been told it’s something to consider in the future. I hope it is going well for you


gp14
5 months ago

@leanne12 Glad to hear the Lemtrada worked well for you and to hear the success! I’ve not yet hear those magic words. I’m considering it but very nervous about the side effects e.g. herpes, colds and flus, run down, thyroid issues. Have you experienced any side effects? If you don’t mind me asking, what were your options for DMTs?


gp14
5 months ago

@stephz thanks for the advice, I will have a look at the link, I am still in two minds which option is the best one for my lifestyle. I am not too keen on taking tablets but at the same time, not too keen on the potential side effects of Lemtrada. It does seem like the more aggressive option


leanne12
5 months ago

@gp14 … lemtrada for me was fine the week went fine no major issues just little things like the rash and the awful taste off the steroids. Etc. …when I got out of hospital I had a month of just feeling crappy…so tired… but ya just have to take it easy. I went back to work after 3 weeks and I have been fine have tired days but just have to listen to your body….I didn’t even catch a winter cold 😃 my bloods have came back fine to… its still early days and i know ive still got a long way to go….the side effects can be scary but to me letting m.s progress would be a lot more frightening…good luck with your decision 😊


sherryak
5 months ago

Ok, I really really really don’t want to mention this, but if it helps anyone… When I tried Techfidera, I didn’t last too long on it. I am an Accounting nerd & had very long work says working on my agency’s 2-year budget. The side effect of Techfidera that finally made me stop it was crapping myself. I could not get to a bathroom fast enough. And I always ran there. I bought a lot of underwear & just considered them disposable. (I was NOT going to take THAT home.) I still always have an extra pair of underwear in my purse. Always. But the bathroom issues would keep me from working late & I just came to accept that I would be working 7 days a week until the budget was finalized. Even though I no longer have the bathroom nightmare since stopping Techfidera, I have got a lot of underwear. Lemtrada has been good to me. I had a scary 24 hours about 4 days after the second round of Lemtrada. Other than that one time, I haven’t had any issues with it. I do the monthly blood work & urine test; but I did allergy shots for years, so I’ve gotten used to the needles. While having the bathroom torture on Techfidera, I was ready to take nothing & was ready to just die young as long as I didn’t have to deal with THAT.

But that is all my view of the two. Someone else could have a completely opposite view of the 2. Good luck deciding!!


grandma
5 months ago

I don’t know about Lemtrada, have been on Tec for 5 months after 23 years on Avonex (there was no choice when I was first dxd) They decided that the Avonex was no longer working so I was given all the info and I chose Tec as I had had 23 years of injections, so a tablet twice a day seemed like a good deal, no major side effects, the usual in the first few weeks but the last 3 months have been symptom free, in fact my biggest problem is remembering to take the tablet! Everyone is different so experiment if you can and good luck with whatever you decide😍


tracyd
5 months ago

@gp14
I had Lemtrada straight away when I was diagnosed. I’m now 3 years and 2 days beyond the start of treatment. I’m also 3 years no evidence disease activity confirmed by MRI

I am one of those who now takes a little thyroid pill once a day – it’s not really a problem at all and far less inconvenient than where I was 3 years ago with my sight deteriorating to the point I could no longer drive at night and my legs failing. Life for me is normal again now and I don’t regret my choice at all. I would do it all over again in a heartbeat if I ever relapsed again.

As for the liver thing …. unless you’re in America and forced to take anti viral meds long term while they watch for a CD4 count on the monthly bloods it’s not really an issue – sadly liver problems are a side effect of long term anti viral meds – in the U.K. we get 28 days only and it’s far less likely (and interestingly the stat is made of 1 person during the trial – which is the same stat as it simply occurring in beneral population 0.03%

The last 3 years of my life are all fully documented in real time if you want to take a read …. it’s a bit Adrian Mole for a middle aged bird with MS and lots of pets and life stuff more than dwelling on the condition which isn’t really a problem any more.

http://www.tracyslemtradajourney.co.uk

You have a friend request if you want to talk, I’m happy to share contact details by private message xxx


gp14
4 months ago

@sherryak thanks for sharing, it’s helpful to know of your experience as I already have a sensitive stomach so this has been a slight worry. I’m glad Lemtrada worked out for you in the end.

@grandma How did you find the injections? My neurologist didn’t give me the option of the injections. I guess after 23 years the tablet is a great option. May I ask those taking Tecfidera, how big is the tablet? Is it comparable to a 500mg paracetamol caplet or is it bigger? When I mean bigger, is it comparable to the gastro lining tablet they make us take before each oral dose of steroids? I wonder as I only recently started to swallow tablets

@tracyd Thank you for sharing your blog, I actually have read a few parts of it already as I found it on google search! It’s great that you have documented your experience with it, it would be helpful to continue to document for a longer term case study. I have been reading the OMS book regarding their 7 year study on Lemtrada. I will reach out to you directly 🙂


tracyd
4 months ago

@gp14
I have no intention of stopping documenting everything. It seems to be quite therapeutic for me if nothing else 🙂

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.