@Robean

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Robean

Newly diagnosed - treatment choices!

Hi everyone, this is my first post on this site which was recommended to me by my MS nurse! I was officially diagnosed with RRMS in August after a 2nd episode of double vision - 1st episode was 5 years ago and back then I had a lumbar puncture which was positive, I knew there was a high chance I’d have a relapse so my diagnosis wasn’t much of a surprise! Thankfully I have now fully recovered from my recent relapse and have no symptoms at the moment - I am hoping it remains that way for as long as possible! I am really keen to get started on a DMT after talking to my neurologist, MS nurse and from my own research. My neuro recommended either Aubagio or Tecfidera but my MS nurse talked me through all the options and basically said the choice is mine and sent me away to think about it - I have a follow up next week to hopefully get the process started with my choice of DMT. I am leaning towards Tecfidera at the moment, mainly because it’s the most effective of the first line drugs I’ve been offered. The fact it’s an oral tablet is also more convenient of course but I’m not adverse to injecting (I’m a nurse!) My other consideration is the fact that I’m only 26, got married in June and my husband and I are thinking of starting a family in the not too distant future (probably in the next 2 years) and I know most DMTs aren’t suitable before/during pregnancy and while breastfeeding. I was thinking about starting Copaxone for this reason but my MS nurse didn’t seem to think it was a big deal unless I was planning to have a baby really really soon or likely to have an accident (I’m not!). She said I would have to stop whichever drug I choose once I decide to get pregnant which I guess is fair enough. I’ve ruled out Aubagio because I’ve read it takes 2 years to leave your system and you can’t conceive until then! So I’d love to hear your thoughts - has anyone been in a similar situation? How did you choose which DMT to start on? And has anyone started a DMT then stopped to become pregnant? Did this cause you any problems? Making this decision feels crazy and a lot of pressure and I can’t believe us MS patients have such a say in what treatment we have - most other illnesses you are diagnosed, get given a medication and told to take it, no questions asked, no choice and no decisions to make!!

Highlander

@Highlander

@robean Hi and welcome to the club 😀 Above this post you'll see some boxes relating to some of the things that you mentioned, click on them and it'll take you to other posts made about that subject. Feel free to ask anything you like we'll try and find an answer one way or another 😀 Welcome again 😀

ItsMewithMS

@ItsMewithMS

I had some MS symptoms before pregnancy although MS was not diagnosed until my daughter was 2. The Optic Neuritis I had I was recently told (at Mayo MN) sounds more like it really was an optical migraine and the little episodes I have had in the last year as well. Totally an annoyance thing with no real impact or loss of vision, no pain and they go away within an hour. Just a blinky/flashing shape (once a C once a square) with little boxes or lines it it that are primarily black/white. I just provided a description so if anyone else gets that to have it checked as an Optical Migraine instead of Optic Neuritis. I just had weird stuff like that going on in my 2nd trimester and then they went away in my 3rd trimester. At one point there was a study going on if they could find out what miracle mix of hormones goes on in the 3rd trimester that kicks women out of MS symptoms. It could be useful to push us into relapse instead of prednisone. So- good luck- follow the advice of your GP and Neuro and let them know of any weirdness. Be aware as well of requirements during breastfeeding. There are so many benefits to babies and moms while breastfeeding you don't want to miss the experience and I think it helps keep MS at bay as well.

Vixen

@Vixen

Hello @robean and welcome to Shift. I went for Tecfidera as I felt it had the least impact on day to day working life, and it's worked well. Different health authorities vary greatly it seems, between recommending DMDs and leaving folks to decide with little knowledge of prompting given. Not sure which is the best way to be, really. I have an idea that Tecfidera is quite rapidly expelled from the body, but I guess the impact it has is longer lasting. The good thing is that you are very young and have plenty of child-bearing years ahead of you :-)

Admir_Nurkovic_1

@Admir_Nurkovic_1

Since you are young and planning family, take into consideration Ovrevus which taken as infusion once in a half year. Best regards.

Robean

@Robean

Thanks for all your replies! @itsmewithms my MS nurse told me the same about pregnancy being a protective factor against relapses! I’ve always wanted to breastfeed as well so will definitely try if I can! @vixen I agree with what you say about Tecfidera and one of the many reasons I am pretty sure that’s what I will go for! Have you experienced any of the side effects? Just wondering how common they really are! @admir_nurkovic_1 thank you, at the moment I am not eligible for Ocrevus (or any of the infusion drugs) on the NHS as my MS hasn’t been very active so far. It’s good to know there are a range of effective treatments for the future though if I do start experiencing more frequent relapses!

Admir_Nurkovic_1

@Admir_Nurkovic_1

https://youtu.be/wkqOC8G5F3Y Take a look of this video. I think it is very helpful. The best doctor. Aaron Boster.

Lightning87

@Lightning87

Hey :) I have been on Tecfidera for a year now, it fits with my lifestyle and no real side effects apart from the odd flush. Annual MRI tomorrow so will see if it’s working...it’s such a hard choice isn’t it with so many to choose from and it being up to you!! It’s a difficult decision but go with your gut, it’s never far wrong x