jennyaa 08/03/18
Last reply 3 months ago
Lemtrada

Hi there

Has anyone ever used lemtrada or tysabri?

I am changing medication and my ms nurse said it will be one of these two which are infusions (two yearly and monthly) would love to hear any reviews also trying to fall pregnant in between.

Thanks
Jenny

Add categories

Browse categories and add by clicking on them

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


curious-one
3 months ago

Check out Mavenclad 🙂 comparable in terms of performance to what you mentioned, but with a much better safety profile. More info here:

https://multiplesclerosisnewstoday.com/2018/03/01/argentina-approves-mavenclad-for-relapsing-ms/

Of the two you have been offered, both have their unique risks. If you’re considering pregnancy, pretty sure you’d have to be off Tysabri for a certain period for it to “wash out” of your system, whereas you won’t have that problem with lemtrada.


leanne12
3 months ago

Hi i was diagnosed this time last year and these 2 were offered to me as my m.s was aggressive. I was going for lemtrada anyway but then in a blood test they found in was jcv positive and dont recommend tysabri with this. My lemtrada round 2 is due this June. Good luck with your choice.


marcyg921
3 months ago

I finished Round 2 of Lemtrada and from my experience Lemtrada is risky but it has been well worth it for me.
In terms of my symptoms with MS, every single one of them has either gone away or improved dramatically. For example I use to limp for no reason whatsoever, that hasn’t happened in over a year. My left hand use to itch like crazy and curl up whenever I tried to lift anything heavier than a plate, now I can lift boxes with it. I use to have this weird numbness feeling down my left side that at one point I thought I was having a stroke, that has never come back.
With Lemtrada we need to commit to monthly blood tests to make sure everything is fine and so far all my blood work has come back fine and according to my last MRI, I don’t have any new lesions and some even look like they have even shrunk. But at the end of the day, the most important thing is that I haven’t relapsed again which I couldn’t thank Lemtrada enough for.


tracyd
3 months ago

In April 2015 I was losing my sight, my legs were packing up and with Highly Aggressive RRMS the future looked grim.

I had Round 1 of Lemtrada in May 2015, found 2 May 2016
I have been No Evidence Disease Activity (NEDA) since …..

Life is normal now, my eyes are just as crap as they’ve always been but they work, my legs work fine, I take absolutely no treatment for MS at all

Unless I ever relapse again – I never will.

Lemtrada was the only one that offered that level of hope then – it remains the only one that offers that level of hope now


dmargarita
3 months ago

Hi, i had both Lemtrada an Tysabri. i Was diaggnossed in april 2014 and started Tysabri in June 2014. I was on Tysabri for over 2 years. During this time i had no relapses and no side effects. I went once a month to the hospital for my infussion, and walked out as if nothing had happend. I wasnt JCV possitive when i started tysabri, but after 28 months my numbers started going up. I was jut married and was thinking about getting pregnant so my doctor recommended to change to Lemtrada. He told me that i should wait 4 months after Round 2 to start trying to get pregnant (no there yet). I never asked him about pregnancy with Tysabri so i dont know how it works ).

I had R1 of Lemtrada December 2016 it wasnt too bad, i had no rash or nausea i was just tired for some weeks and stayed home for a month, but after that, i went back to work and it was actually a good year for me.I had R2 December 2017 and the side effects were almost the same as in R1.
They both worked for me, but i think you should talk to your dr about your pragnancy plans.
Good luck with your choice, if you have any questions you can send me a DM, and im sorry if its a bit confussing, english is not my first lenguage 😉


jennyaa
3 months ago

Thanks everyone for your stories/ comments. 🙂


sciencegeek
3 months ago

Now that Mavenclad has been licensed, it’s defi worth looking at and discussing with your MS team. There are no risks of secondary autoimmunity, unlike lemtrada.

Lemtrada remains one of the riskiest options in terms of serious side effects, but does have the best long term results in preventing brain atrophy.

Tysabri is only risky if you are JCV positive, and there’s the potential for rebound effects when you come off it.

Both Lemtrada and Mavenclad will permanently change your immune system (hopefully for the better).

Good luck with making a choice.

Post Comment

You must be logged in to reply to this topic.