Forum

First appointment with MS nurse on Monday

and I’m preparing my list…I do like a list (otherwise I forget everything!)

So, comments would be appreciated.

  1. I am going to be starting on Tecfidera. I want to do it as slowly as possible to minimise side-effects. How did other people start on it? i.e. dosage. I’ll ask about the aspirin and antihistamines.

  2. I don’t need a disabled badge now and don’t think I’d even qualify for one. But doesn’t it take a while to get one issued, and is it better to apply early, based on a ‘just in case’ scenario? This probably sounds like negative thinking, but I like to be as prepared as possible for things. I thought I would mention this to the MS Nurse.

Thanks - Louise

hi louise

my tecfidera came with 2 weeks at a lower dose and then it went to 2 x higher dose capsules.

i think it was too drastic and would have liked to have extra low dose capsules.

however i have been managing most days to take the 2 doses.

occasionally if i’m feeling nauseous i just have one capsule.

i haven’t told my ms nurse but i’m seeing her in 2 weeks and may get my wrist slapped.

my problem was that tec made me sick, as in pebble dashing the stairs.

i had eaten well beforehand but was still sick.

then i tried eating a small amount after as well. sort of trapping it between two lots of food.

it’s working for me.

as for blue badge - yes get advice because mobility crashes suddenly (fine one day and falling the next) and it would be good to be prepared.

good luck with the tecfidera

carole x

Tecfidera is started at a lower dosage anyway. But side effects tend to be minimal.

It’s a good idea to get a list of things to take with you. Keep a notepad handy and note any questions that come to you for your appointment. There is no such thing as a stupid question, so get all the knowledge you can.

As for the blue badge, you need to meet certain criteria. Gov.uk has a checker:

It costs £20 where I am and it can take some time. If you’re eligible, go for all you can. As I always say: If it were the other way around and you were eligible to be taxed, do you think the government would think twice before levying you? Nuh uh!

HI,

I think the normal starting dose is 120mg twice a day for the first 7 day’s.

Then it’s 240mg twice a day.

Make sure when you do get started on Tecfidera to make sure you have had a decent amount of food before you take it.

This will help to reduce any gastric side effects. I have had a bit of flushing and a rash but it’s only happens occasionally and doesn’t last long. So i haven’t used any Asprin etc. As i think i am taking enough tablets each day already.

My MS nurse helped me with some of the questions on the application form for a blue badge.

I always take my wife to the appointments that way we should remember what i wanted to ask and also the answers to our questions.

Thanks for that. The appointment has been been postponed for a week - which gives me more chance to build-up my list of questions! And to put my Tecfidera requests in order!

db9355 - thanks for that link about disabled badges. i just did the questionnaire and it said that I would have to be assessed by the local authority. What’s actually involved in a mobility assessment? I ticked the box for ‘substantial and permanent disability causing inability to walk or substantial difficulty in walking’. If the assessor turns you down, is there a statutory time that you have to wait before you apply again? I don’t think I would ‘pass’ the test now to get it, but as you never know what’s around the corner (hopefully nothing…)

TIA Louise

hi louise

​re blue badge application

make sure that you emphasise the difference between a early on a good day to later on a bad day.

good days you wake up feeling halfway to normal, bad days you feel halfway to being a zombie.

the start of a shopping trip i can walk holding onto a trolley but after 1 hour in the supermarket i can hardly speak and my walking is really bad and painful.

this is the way we have to present our ms to the DWP so good practise for PIP.

carole x