simon2016 05/06/17
Last reply 8 months ago
Finally

Finally I’ve been to see the specialist it’d only taken 6 months to get this appointment. I was only diagnosed in December 2016. Will soon be starting my 1St treatment but need to decide which drug to go with its either tecxiole 2 tablets a day or auboyio 1 a day sorry but can’t read the specialists writing it’s that bad

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
8 months ago

@simon2016 , I’ll assume that you’re being offered Tecfidera or Aubagio.

These are both oral medications, although Tecfidera may just be a bit more efficacious.

You should do your own research on these, and the other Disease Modifying Treatments (DMTs) that are available, Then decide which one suits you best.

Here’s a good place to start:-

https://support.mstrust.org.uk/file/MSDecisionsWeb.pdf .


californiadreamin
8 months ago

@simon2016 I am assuming the drugs the dr mentioned are the same ones stumbler mentioned. There are about 15 approved drugs today and there are 6 I would consider as drugs to start with depending on how MS initially presents itself. I am not a dr or have any professional background but have spent a lot of time watching, reading and listening to opinions of lots of different MS specialists (many available online).

I would choose Tecfidera or Gilyena or Cladribine (if available) if you have no reason to believe you have an aggressive form. (Risk factors include how it presents, number of attacks, age, gender plus others).

If you had a more aggressive form then it would be important to know if you were JCV positive or negative.

Aubagio would *not* be on my first choice list. It is not as effective as a first medication and from a risk perspective not as good either. I am not sure why your dr didnt include Gilyena other then they would rathe give you something that doesnt require any monitoring becuase its easier for them.

Anyway, read about the different drugs, but Tecfidera is likely a good first choice and seriously consider avoiding Aubagio.

My wife and I follow a lifestyle protocol called OMS (overcomingms.org). Consider something like that in addition to the drugs. There are a specific set of supplements that my wife takes as well that I believe have enough edvidence to show they are helpful for ms as well.

Hopefully that helps, again its my opinion, but based on reading all the phase 3 test results and looking


simon2016
8 months ago

Hiya thank you all for that yea those 2 that you’ve said about are the right ones I just couldn’t read his writing I think I’m going to go with the aubagio to start and see how I get on with it the second one I’m not so sure about at all but will discuss it with the nurse when I see her. We’re limited as to what drug are avaliable here. I’ve also gotta see a few other people about different things too.


sasha999
8 months ago

try and insist for Lemtrada as it will change your life, nothing else works the same. good luck to you lovey


molineux1047
8 months ago

Thanks @sasha999 it’s so useful to get this sort of insight. Im having the same debate with myself as @simon2016 and am steering towards lemtrada


simon2016
8 months ago

The more I read about these drugs the worse they seem to be but I think I will stick to aubagio prob not spelled right. As this is the first time I’ve tried any treatment and seems safe to start with. It’s hard but will discuss it with the nurse when I see here. I can’t believe the consultant neurologist I see today told me straight to my face that I was lazy and needed to exercise more. What a cheek I walk everywhere I can i don’t rely on anyone at all unless I’m desperate. I do practically everything myself and push myself way to hard and he’s says that. Very annoyed with him. But why a fab hospital the Queen Elizabeth is tho so very very clean


stumbler
8 months ago

@simon2016 , given the comments above, you really need to be a bit more active in your choice of DMT.

Every DMT comes with risks, as they are powerful treatments. However, these risks are known and regular monitoring keeps these risks at acceptable levels.

You need to ask yourself the question, “what would the Neuro prescribe if it was their daughter with MS?”. You could try asking the Neuro that question.

The latest philosophy is to treat MS hard and fast with the most powerful treatments. Unfortunately, some Neuros are still adopting the old conservative approach. Starting with first line treatments risks accumulating MS damage, which may be disabling, before treating the MS aggressively.

Do your research, then you’ll be able to participate actively in a discussion, rather than be told what treatment you’re having.


californiadreamin
8 months ago

@simon2016 I think what the dr said to you seems highly inappropriate to classify you as lazy. That is not the dr’s place to pass those judgements on you, but rather to offer you the best options to improve your outcomes. Its up to you to decide to follow through on those or not. They dont know your whole situation.

I wanted to reiterate what @stumbler said regarding the DMT choice. I believe you are settling for a riskier drug for the effectiveness it delivers. It is a personal choice and you need to do what you think is best, but these drugs arent things that are done lightly and its not like switching between fever reducers. There are impacts to your body. There are large ramp up times to get approved. Please take the appropriate amount of time to thing through a choice you are very comfortable with.

Barts (a very well known MS research group) has indicated it works better in one case, which is when other DMTS fail. In most cases its not as effective.

Again its totally your choice and I am sure many people use that drug and are happy with it. Its just a matter of odds.

Post Comment

You must be logged in to reply to this topic.