Last reply 1 year ago
Advice! Pregnancy and Lemtrada

Hello all!
My husband and I would like to try for a baby but I am currently taking gilenya and my MS nurse has suggested switching to Lemtrada and then trying to get pregnant. The other option is coming off medication altogether. Has anyone gotten pregnant while on lemtrada? Any advice much appreciated!

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stumbler
1 year ago

Hi @weefriend and welcome.

Lemtrada, unlike other Disease Modifying Treatments, only stays within the body for 6 weeks. This would therefore seem to fit with your family plans.


weefriend
1 year ago

Thanks @stumbler. My MS isn’t highly active so worried about side effects and risks of taking and considering going drug free 🙂


weefriend
1 year ago

*taking lemtrada


stumbler
1 year ago

@weefriend , yes, there is the risk of side effects with Lemtrada. But, there is also the risk of permanent disabling symptoms with MS progression.

Do your research and make your own decision. 😉


tracyd
1 year ago

@weefriend

After a Lemtrada treatment it is advised that the person waits 4 months before trying to concieve.

Lemtrada is 2 treatments 1 year apart …. 5 days at the start then 3 days a year later, so getting pregnant in between the 2 treatments would mean they would need to be more than a year apart. (It does happen though I know a number of people who’ve had a happy unplanned arrival between round 1 & 2)

For long term stopping progression, Lemtrada is the the dogs proverbials, and when planning your family I guess that is a really big factor.

you have a friend request if you need to talk I’ happy to share contact details xxx


weefriend
1 year ago

Thanks guys. @tracyd would it be ok if I sent you a private message? Xxx


tracyd
1 year ago

@weefriend
PM and time you want sweetie xx


lomogirl
1 year ago

@weefriend hey, I’m recently diagnosed and have been encouraged to have lemtrada despite not having any relapses that I’ve known about but new activity on my MRI. One of the reasons was it fits well with my plan to have more children. My daughter is now one and a half.

I’ve weighed up my options and decided to go for it. I’ll be having lemtrada asap. But as said above I will wait until four months after the second, three day infusion before we start to try. My sister had lemtrada and ended up with the likely thyroid problem. Which in turn can also affect fertility.
Pm me if you would like to chat and good luck whatever you decide.


weefriend
1 year ago

@lomogirl Thanks so much 🙂 I’ll PM you xxx

How long have you been on gilyena? There is risk of a serious rebound coming off of it. Has your nero talked to you about that? The timing of the next dmd is super critical. If you want I can paste you some links that discusses this more.


weefriend
1 year ago

@californiadreamin No I haven’t heard about that yet! I have chatted to my nurse but I won’t see my neurologist for a few months and will ask about this then. I have been on gilenya for almost three years. Yes please paste me the links! Thanks so much xxx

I will try to find some more links but this happens in about 10% of patients.

This explains how gilyena works in simple terms:

Can you google: Gilyena rebound

Will write more shortly…

Here are a few more links (i spleed gilenya wrong in the previous post, sorry was on my phone typing)

Severe rebound of disease activity after stopping fingolimod (Gilenya)

Here is something from shift.ms:

Gilenya washout

Anyway the key thing is to make sure you time your next DMD exactly right (there are a number of videos that talk about what that timeframe should be). If you choose not to take anything you should be aware of it.

While there isnt a ton of science to support it, there is some and I would consider a fast (several day) after coming of gilenya if you arent going to do another medication around the same timeframe as when you would have started the next DMD. I think there is some evidence that your immune system in starvation mode mounts a response to kill off a bunch of uneeded cells and then builds them back when your fast is over. Knowing you might have a serious relapse on the horizon something like that might be worth a shot.


weefriend
1 year ago

Thanks so much for this @californiadreamin xxxx

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