poppy12 20/12/17
Last reply 4 months ago
Some DMTs may be scrapped in the UK

Hi all

As if life wasn’t already hard enough, here are some potentially very bad news on the range of DMTs available to some of us in the UK:

https://www.mssociety.org.uk/ms-news/2017/12/nice-propose-restricting-future-ms-treatment-options?utm_source=Facebook&utm_medium=organic_post&utm_content=NICE_propose_restricting_future_MS_treatment_options&utm_campaign=2015M1003_0090

There is a link to a consultation in the article, please give feedback if you can.

Big sigh.
Poppy

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stumbler
4 months ago

This doesn’t surprise me. Medical science has developed better (and more acceptable) drugs, so it seems reasonable to pension off some of the original first-line medications.

This will direct some of the more conservative Neuros to consider more effective drugs at the outset, rather than wait for more damage to occur whilst trying these first-line treatments.

It won’t affect the current users of these drugs, it’s just for new prescriptions.


poppy12
4 months ago

That’s a good point, @stumbler. I hadn’t looked at it this way.

My reservations are threefold though:

1. There is wide variation in how effective a DMT is for an individual. One interferon can be a lot more effective than another one for one MSer while for another MSer either may work fine.

2. Interferons and Copaxone have been around for a long time. As a result, their long-term risks and benefits are known. We don’t have such data for newer DMTs, only time will tell. For example we only now start seeing secondary immune problems following Lemtrada treatment. The clinical trials that led to EMA approval indicated that there is a 1:3 risk for this side effect. With more people receiving the treatment, this now looks more like a 50:50 risk.

3. Most DMTs are immune suppressants. Copaxone is not and it’s currently the only DMT which is deemed safe when trying to conceive or pregnant. This is r


poppy12
4 months ago

… oops clumsy fingers hit submit by accident…

3. Continued: … really important given the demographics of many MSers (females between 20 and 40 years old). For me personally (I’m on Copaxone and TTC), if Glatiramer acetate hadn’t been available at the moment I qualified for a DMT the choice would have been between TTC or treatment. For many getting pregnant can take a while, leading to potentially long intervals without a DMT.

I do take your point though and maybe I am a bit biased, especially about the fact that Copaxone is on the list, too.

poppy


samanthathompson
4 months ago

I also read that it will also affect people who need to switch, leaving a much smaller pool of drugs to chose from. If Aubagio doesn’t work out I am stuffed because I do not qualify for the more effective treatments. To say I have the hump about this is an understatement!


stumbler
4 months ago

@samanthathompson , no need to panic yet, this is a consultation only.

They’ve already suggested that there will be no change for people already on these medications. It’s just going forward for the newly diagnosed.


smurf69
4 months ago

What about people like me who have got a CIS diagnosis and only eligible for Rebif, Betaferon, Avonex and Copaxone? What will we be eligible for? I’ve recently stopped Rebif due to low wbc, awaiting bloods and review in 2 months with neurologist. Will she be able to restart Rebif or offer an alternative?
I’ve submitted my feedback.


stumbler
4 months ago

@smurf69 , I’m sure, in your case, you could continue the Rebif, as it wouldn’t be a new prescription.

Extavia will be the last available first-line drugs, unless they all you to step up to something more effective. We’ll have to wait and see how this consultation addresses meds for CIS.


smurf69
4 months ago

Thanks @stumbler, I don’t think my neurologist will want me to continue with Rebif. She alluded to changes to how CIS is classified. I’ve read that the new Mcdonald criteria will allow for an MS diagnosis without dissemination in time if positive LP. I’m guessing that she’ll diagnose me with MS when I see her in February. However, what I’m wondering is how I’ll get on if she wants me on Copaxone given the proposal?


stumbler
4 months ago

@smurf69 , the whole MS Drugs landscape is pretty volatile what with this consultation on top of the proposed re-calibration of the McDonald criteria.

You have a forward thinking Neuro, so I’m sure you’ll be given the choice of the best options available at the time.


smurf69
4 months ago

@stumbler – I know that I’m lucky having a neuro who is willing to treat CIS and will apply the updated criteria if applicable. However, there are times I wish she would join me burying my head in the sand! I know that this is totally illogical and it’s best to treat this head on.


hollylb10
4 months ago

I took myslef off tec and have been told that plegridy is a new drug I should consider. Is it not new? I am no good at taking tables twice daily so it was recommended to me as it’s a once fornigtly injection. I was going to turn it down and see how I got on for a year but that would then mean I wouldn’t be able to take anything if I change my mind!


stumbler
4 months ago

@smurf69 , the problem with burying your head in the sand is that when someone takes advantage and shafts you, you just don’t know who did it! 😉

It’s best to stay ahead of the game.


smurf69
4 months ago

@stumbler, that’s very true and gave me a grin 😂

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