Due to be assessed for DMT on Thursday

My husband was diagnosed Jan 2016. He has been seen by his neurologist several times and has now been referred to another Consultant to concider DMT.

He is currently not on any medication but has been receiving Vestibular phyiso for several months, which has had limited help with his servere vertigo so far.

his main symptom is the vertigo/dizziness/as though drunk sensation which he has 24/7 until bedtime when he lays down.

MY QUESTION TO ALL IS… I am concerned that he will not been offered any DMT medication and want to be very well prepared…any advice would be very much appreciated.

mitch

Hi Mitch

Have a look at the MS Trust decision aid: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid that will at least give you (and your husband) an idea about the various alternatives.

In general, it’s accepted that a good (possibly the best) first line DMD is Tecfidera. However, if he’s been suffering nausea with his vertigo, 'Tec may not be the best idea for him as it can make people feel very nauseous getting used to it. You can mitigate against this by following the advice of people on here (especially Paolo) on how to take Tecfidera: take a low dose for much longer than is generally given, increase the dose slowly, eat plenty before and after taking the drug. But you and your OH may not want to risk it if he already has bad nausea. It might be better to start on a different drug.

So take advice from the neurologist. If your husband has been diagnosed with relapsing remitting MS, then he should be offered a DMD. It’s just a question of what he can handle whilst trying to rid himself of the horrible vertigo.

He has my sympathy. I’ve had vertigo myself and it’s dreadful.

I hope the appointment goes well.

Sue

Why is this your primary / only concern? The forthcoming appointment is to determine a DMT to start on… i would be more concerned about having to wait a year between diagnosis and getting some form of pill to pop! And so really, you’ve already got past the worst part of it.

Good luck! (And demand Tecfidera! laughGet the 120mg capsules for the foreseeable future)

2 Likes

I had 16 years on Rebif and now I’m on TTecfidera. The misery and náusea wer horrible until I had to restart due to vomiting… I feel great now. I have primperan for nausea and take the capsule with the a thin slice of toast and peanut butter. I feel like me again.

I think all willbfbe ine this time. My neurologist told me that if I’m no better, then Gilenya is next.

The mistakes are the dammed iPad.

DAMN ipad.sheeez really.

Dear COS

You had misery and nausea due to Tecfidera?

HiMitch

just wanted to say not everyone gets nausea with Tec, well I didn’t the odd flush and indigestion and that was it,I’ve been on it for nearly six months. Give it a go.

All the best

Ann x

hi mitch

prepare yourself with omeprazole, and tempting foods - peanut butter does it for me.

ask for extra 120mg capsules - make sure your neuro/ms nurse knows that you want them.

take your tec 3/4 way through a meal so that it is caught between 2 lots of food.

have aspirin handy for the flush if he gets it.

carole x