Last reply 1 month ago
First treatment due

Hi all

I am due to start treatment for the first time & have been offered either Brabio or Abonex as first line.
Any experiences of either? Side effects etc?

I’ve read up a lot & spoken with my ms nurses & im leaning towards Avonex

Many thanks x

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1 month ago

My experience of Avonex was that it was the only thing offered at the time and caused a weekly depression and in my view is an antiquated poor treatment option. There are far more effective treatments available that will help prevent disabling relapses rather than allow MS to smoulder. It’s too late when it fails which it will as the effectiveness is questionable. I am sorry to be so emphatically negative but it is a bit of a crusade of mine to encourage folks not to even start CRAB drugs. Even if you are wanting children there are other more effective options. But it’s your life and your choice.

I suggest you look at videos by Aaron Bolster or read Dr Giovannis opinions on the drug choices you have been offered.

1 month ago

@carole-ann_scott , I totally agree with @strictlysoca , Why start a first line Disease Modifying Therapy (DMT)and risk further MS damage, before you are considered for a more effective DMT?

1 month ago

Thank both for replies.
There is a clinical pathway where I live with first line treatments being offered firstly. If they don’t work then you move to the 2nd line treatments.
It’s the way the nhs works here from what I’ve read so I don’t think I have a lot of argument just now. We don’t know how active my ms is either at the moment as I’ve only had 2 MRI’s since diagnosis.
I had to fight to start treatment in the first place so I’m feeling glad that something is being done but I might be looking at this all wrong 🤷‍♀️

1 month ago

@carole-ann_scott , it’s your body, not their’s, so fight for what you want. Clinical pathways are just suggestions.

What would your Neuro give to one of their kids, if they were diagnosed with MS?

1 month ago

Hi it isn’t the way the NHS works necessarily it’s a bit more complicated than that. Ask them why when the new paradigm for treatment is to go hard and early. There are lots of resources out there like Barts MS blog which is nhs based. If it is that the team can’t get it past the consultant and they are the gatekeeper then think about changing. You don’t say where you are but there are some really laggard neurology departments out there. You’ve had MS for 12 years smouldering away so starting on some outdated treatment that was the only thing available 12 years ago may not be the best choice.

Wishing you all the best

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