Paul

Everyday living
1

Hi guys, I have been taken off plegridy and now have to take aubagio and does anyone have experience with this drug?

Also will my hair definitely fall out?

2

Hi

Why have you had to stop Plegridy? And why go onto Aubagio? To me that sounds like the worst DMD available. It’s only got an average relapse reduction rate of 30% and still comes with potential side effects.

I would have thought Tecfidera a better option. Unless you qualify for Tysabri, in which case that’s better still.

Sue

3

Hello,

I am in exactly the same situation. Have had to stop Plegridy and am awaiting a Nurses appointment for bloods before I start Aubagio. The hair loss worries me as I have thin hair anyway and have suffered loss on Plegridy and Avonex.

Sam

4

hi paul

i take tecfidera and my thick hair has been thinning to the point of causing me to worry.

my ms nurse advised biotin supplements which i bought from Boots.

i also bought some alpecin caffeine shampoo and conditioner.

can’t wait to see the results (i only started them yesterday).

carole x

5

I’m puzzled too - why Aubagio?

I was on Plegridy for 18 months and have recently started Lemtrada.

Have you both (Shifty23 and Samatha72) not been offered any option other than Aubagio?

6

Hello AngC,

I was offered Copaxone and Tecfidera. I had to rule out Tecfidera as I have stomach issues as it is and my Nurse said it will cause stomach issues at first. I ruled out Copaxone the first time round, so I was left with Aubagio.

I am really confused and miffed at the moment with this drugs thing because Gilenya has the same effectiveness as Tecfidera but that wasn’t offered. I have never been offered Tysabri or Lemtrada. I would rather hit this aggressively rather than wait until I am so bad that they will only turn round and say, sorry you are now SP so no drugs!!!

Apologies for the rant i just don’t fully understand. Its all down to budget and postcode I suppose.

Sam

7

I would ring the neuro (his/her secretary) and ask why this is not available to you.

If it’s due to budgets and your postcode area, ask them where is your nearest hospital where they do offer Lemtrada, as you would travel if necessary in order to achieve the best outcome for your MS (even if this is not possible for you, still insist that you will do anything to get the best treatment available at this time).

Also explore avenues of alternative funding if necessary. I’m assuming you are in the UK by the way.

Fight for your first choice DMD, you want to get the big guns not wait around for things to change with NHS budgets.

Good luck, AngC x

8

I agree with Ang, try hard to get the DMD you want. Or at least get an explanation as to why you can’t have Lemtrada.

It may simply be a matter of the neurologist not having set up as a prescribing centre for Lemtrada, in which case, could you be referred elsewhere for the treatment?

Or is it that your MS is not described as ‘active’ or ‘highly active’?

Why did you rule out Copaxone? And why did you have to stop Plegridy? If you’ve actually ‘failed’ on a DMD, by which I mean continued to relapse, do you now fit the criteria for Tysabri? Maybe you could ask your neurologist that too.

I assume your neurologist is an MS specialist by the way. If not, you might be better off being referred to one who is a specialist, then you may have more choice of DMD. Again, ask your neuro this. (You can check him/her out first on your hospitals website.)

Sometimes it is a case of doing some research and leg work yourself in order to get the best possible treatment. It’s a shame we live in a world where there isn’t exact parity between neurologist services or between CCGs (who decide what is to be funded in your area and what is not, unless it’s a national standard).

Sue