So as I expected, following my second episode of double vision it has been confirmed by my Neuro that I have MS. He says I have some new lesions on my most recent MRI, but overall the areas of demyelination are small and at the time of the scan (which by the time I had it, symptoms had resolved) I had no active inflammation which he says is a positive. He asked me what I think about DMDs, I told him that I have done my research and understand that there is an increasing amount of evidence that early treatment is beneficial and so I’m keen to get on a treatment. He didn’t really comment either way his own opinion about DMDs but agreed that’s what the research shows but also said he has patients who live many good years without relapses so I feel like the decision is really in my hands. He said if I want treatment, he would recommend one of the first line oral DMDs but said he will ask the MS nurses to see me and go through all the options.
It feels like such a complex decision to make! I have no symptoms at the moment but I know want to start a DMD to hopefully prevent future relapses. The question is which one! I want to get pregnant in the future, definitely within the next 5 years and i know that is something to consider. The obvious choice is copaxone (even though the Neuro specifically mentioned oral drugs to me) as its licensed for use in pregnancy now, but I know it’s not as effective as something like Tecfidera which hasn’t been proven safe in pregnancy yet. I know the MS nurse will go through it all with me but I want to be prepared!
Does anyone have any thoughts or experience with this? I know I’m asking a complicated question and everyone is different but I’d love to hear your opinions and if anyone has links to any interesting articles/research that would be great too!
Hello
I assume you’ve seen: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid ?
Personally (and this is just an opinion), I don’t think Aubagio should be included in first line options. It is only as effective as an interferon or Copaxone but has a long list of potential side effects.
Whatever you do choose you you’d probably plan to stay on it for at least a couple of years. The reason being that all DMDs take a few months to start protecting you from relapses, so unless you have untoward side effects, it’s better to stick with a DMD for some time.
If you are going to be making the decision to have a child/children in the next few years I’d opt for Copaxone (or Brabio - it’s the same drug but cheaper so NHS Trusts are starting to move patients onto Brabio). It is possible to get pregnant while on Glatiramer Acetate (the proper drug name) so it makes sense to start on it.
But if you feel that putting children off for a few years is possible, then Tecfidera would be a good option.
So I think I’ve just reiterated what you’re already thinking. To my mind (purely unscientific opinion), that’s the sensible way to look at things.
Obviously you need to discuss all this with your partner and with your MS nurse. But perhaps have the conversation about children with your partner first.
Best of luck
Sue
Hi Sue,
Thanks for your reply! That decisions aid is really useful, thank you! I’m glad all my thoughts make sense to someone else! I agree with what you said about Aubagio and hopefully this is not what my Neuro was referring to wheb he said “first line oral”. I have absolutely no issue injecting (I’m a registered nurse) so I think copaxone is probabaly the way to go but I’ll see what the MS nurse says when I see her.
My husband is in full agreement about children, and although we know we want to have a baby in the next few years we aren’t in a particular rush as we are still young (26) and have a few things we want to do first - travel, see the world and buy a house! We don’t want to wait too long though especially with an MS diagnosis and not knowing what could happen. So I think it’s definitely a good idea to take it into consideration when thinking about DMDs.
Thanks again!
Robyn
Hi Robeen
i was diagnosed with RRMS last Nov, still getting my head round it, but I’m like you a nurse and read up that DMD’s slow down/ prevent relapses, but no- one has mentioned them to me. Might be something I raise with my MS nurse next month as does make me anxious and feel it would reduce my anxiety if I took one. Only problems I have are with my water works, more tired than normal and sensation in my right leg not right. Have to see what happens
take care
Hi!
Yeah definitely something to mention to your MS nurse! I think I will feel more in control if I’m on a DMD, otherwise I’ll just feel like I’m sitting around waiting for something to happen and like you I am quite an anxious person and don’t think I would cope well with that! It’s so hard being the patient for a change!
I hope your symptoms improve soon! I feel lucky that I am currently symptom free and my most recent relapse resolved completely with no lingering issues. But I’m very aware this may not always be the case which is why I’m keen to do anything to prevent future relapses!
Wishing you all the best!
Hi Robeean
I couldn’t agree more it is difficult being the patient now! We are used to helping people but I never felt so helpless in my life as I have done since diagnosis, like many of us have said its the unpredictability of it that is the most frustrating part. I have only told family and close friends, my ward manager and couple senior nurses so I know I have support if I need it. I don’t want people feeling sorry for me or treating me differently. I know I’ve been diagnosed with MS but it’s not having me!!
keep well
I just had my second dose of Ocrelizumab - next onein 6 months and in one go ( as opposed to 2 initial )
I have had absolutely no side effects !!. All the nurses say how good it is. and chatting to other users, one of them had been on the trials for a number of years had no further relapses in 3 years ( I think he said )
Initially I decided mot to take any DMD but had another relapse in May - Eyes mainly but a pot pourri of sensolry malarky
it was at this stage I qualified for the drug ( Bad news for another leison - good news it got me the drugs ! )
for me …I had to hit it with the biggest stick I had
I know my immue system will be crap for ever more but I’ll take my chances with a cold than double vision thank you very gald
1 Like
So glad to hear you are getting on well with Ocrelizumab remixray! I know exactly what you mean a outhitting it with the biggest stick you can - I’m not a candidate for the most effective drugs just yet as so far my MS has been mild but it’s good to know that if things deteriorate in the future there are some excellent treatments available and many more still in development! It helps me to feel much more positive about the future!
I hope you continue to have a good experience with your treatment and remain relapse free!! 