rachaellouise 31/12/17
Last reply 6 months ago
Meds’ question ?

Hi ,

I was just wondering if they are really getting rid of frontline drugs like copoxone , rebif , avonex If the only choices tysabri and Lemtrada ? Why the lack of choice and why go to the heavy ones! Maybe good but don’t they have more side effects etc. And lack of choice for people

Rachael

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highflyingbird
6 months ago

hello there
i did not hear of this and i personally think it depends on finance in relation to governments etc……….. i live in Ireland and the government cover the cost of front line drugs for MS. if they were to take them away they would have to put an alternative in place and if your looking at the “big guns” then the cost would be far greater so i think this will not happen as finance is the deciding factor in this world when it comes to health (unfortunately)

i have recently went through my first round of Lemtrada and i am doing well. i tried two front line treatments and decided to take the leap into the big guns. yes there are side effects far greater that other treatments but you got to look at your own circumstances and decide if the side effects are greater than your current circumstances………if that makes sense

anyway i cant see it happen just yet. i hope this helps you and stay strong its not easy but remember your far stronger because of it…………


stumbler
6 months ago

@rachaellouise , if they did stop approving three first line drugs, this would still leave a choice of eleven, by my reckoning…………


sonia1984
6 months ago

@rachellouise I was told to not even bother with the frontline drugs. Apparently my Ms is considered aggressive so I was put on Gilenya. Some of the front line drugs work for less aggressive cases of Ms.

There are so many other drugs on the market and in trials or even ones that haven’t been released yet in certain countries. I don’t think they will ever get rid of the frontline drugs as those are the ones insurance companies will cover. It took my insurance a year to cover Gilenya and I had to go on compassionate care through the pharmaceutical company to even receive Gilenya the first year due to insurance refusing to cover due to cost.


vixen
6 months ago

I was wondering if there has been a downsizing of U.K. approved meds, in order to prepare for the potentially huge expense to the UK if Ocrevus gets approved? Obviously as this will be -thankfully – prescribed for both those with RRMS and PPMS the cost if potentially massive…..


chezy17
6 months ago

Hey. I’m on Plegridy, I’ve heard they are stopping this for new patients but anyone who is currently on any of the frontline meds won’t be affected?

Personally, I didn’t want to start taking the big gun meds as mine is quite mild and I’ve been relapse free for over 2 years. I’ve only had two known relapses that they thought were shingles in about 5 years.

I didn’t want to take drugs with too many side affects.

Chez


cameron
6 months ago

I can understand them reducing the choice of three interferons to one but it’s not good that they are including copaxone. That was a real choice for people most affected by interferon side effects and also for women wanting to start a family. On the plus side, though, it might wake up some of the more conservative neuros who (according to many people posting here) are not fully up to speed with treatment options. And it’s worth remembering that the first-line drugs only ever claimed to reduce relapses by 30% – not good enough, really.


chezy17
6 months ago

Me personally, I’d rather have the front-line meds, the reason I picked Copaxone was because of the least side affects and then I chose Plegridy.

To me, as I don’t know the direction of my MS, the side affects seem worse than some of the symptoms of MS. I know everyone is different, and some choose to hit it hard as MS affects everyone differently.

Copaxone and Plegridy seem to be working for me, although I’ll not know if it’s the meds, the lifestyle changes or in fact the MS but I still think if it’s known to work then they should keep them…that’s me though and I guess I’m still fairly new with it and working it all out 😊.


gates1989
6 months ago

If you’re already taking then you’ll be fine, they won’t take you off x

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