@Lizzy86

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Lizzy86

Treatment by Tablet?

Hi, I know there's been a huge buzz around the tablets being introduced to treat MS instead of the dreaded injections(which we must get to grips with to continue!) Has anyone on here been prescribed the tablets instead? And how are you getting on with them? Take care xxx

Bloomers1968

@Bloomers1968

Hi Just been perscribed gilenia and its a second line treatment so i wasnt in a rush to get off the injections. Dont know if what if any the side effects are but i can tell you the first one is taken in hospital with a heart monitor linked up for 6 hours. Its all fun isnt it Daniel

DJDsouza

@DJDsouza

Don't take any DMDs, but was prescribed the steroid tablets instead of the intravenous drip - worked much quicker than usual.... if that's any help (probably not though..... hope you're well @lizzy86)

Kad21

@Kad21

I spoke to my MS nurse the other day and the tablets are called aubagio. I enquired about them as I absolutely hate the injections. Basically at the end of April there will be a decision as to whether the NHS will fund the medication and if so it will be available by autumn, so not too far off in the grand scheme of things. It has already been approved by NICE so it's just a waiting game now.

Stumbler

@Stumbler

It would seem that Gilenya is the only available oral option in the UK. And, it has good reports so far. I'm sure you'll get some firsthand reports soon. Other options, Aubagio and Tecfidera are still awaiting approval to be used by the NHS.

Aileen

@Aileen

I'm also on Gilenya after failing on Rebif (Horrible painful injections every second day, side effects were worse than the MS! For me anyway, lots of people get on just fine with it). Love Gilenya, one capsule every day, no side effects and my symptoms are much better. Everyone is different though it all seems to be a lot of trial and error. Was a little bit scared that I had to go to second line treatment but it's working so I'm happy enough. Unfortunately it seems to be a case of you don't know how it'll go until you try it with all of the meds. I'm in Ireland but we seem to be on the same page as the UK meds wise (except for Sativex)

Mrs-Ms

@Mrs-Ms

Hi all... I'm a bit confused... Why are you all talking about first line and second line drugs? What is the difference? Are the second line drugs more aggressive or used for the worse cases of ms? Asking as my impression (from talking to two neurologist) here in Australia is that you can start on any of them even if you are newly diagnosed. Many thanks

Stumbler

@Stumbler

@Mrs-Ms , that's a very good question. Who knows the answer for sure, but it could be a UK thing, where money may come into the equation. :???:

apemery

@apemery

Hi just a line about my experience on gilenya my ms nurse tells me you need to be on a first line dmd (I was injecting avinex) before going to a second line dmd. I have been on gilenya since November and have not felt better for years although after the first few weeks it has lost some of its "buzz" I still feel better for taking it the only side affect is a low white blood cell count so regular blood tests. I hope this drug works for you good luck

JasFromTas

@JasFromTas

Hi MrsMs. I am also in Australia, where the health care system is different to some other places (UK, America, for instance). In some places you have to 'fail' (ie, relapse through, or get worse whilst on) a first line drug, before they will approve you to use a second line drug. In some places there are even third line drugs. I think it is down to a cost issue, and a side effect risk issue. In Australia there is no such system. I went on Tysabri as my first DMD (it is normally considered second or third line), and am now on Gilenya (also considered a second line in some places). The Neuro's will decide what to prescribe on a risk / benefit ratio - with prescription of high risk or disability patients being prescribed higher risk drugs (such as Tysabri) early on. We are very lucky here in Australia. Currently for relapsing disease there are the following available: Copaxone, Betaferon (A and B), Avonex, Gilenya, Aubagio, Ticfedera, Tysabri and recently Lemtrada/Campath (approved by the TGA in December 2013, still awaiting PBS clearance). There are (some, but not as many) other options for progressive disease. You can pick whatever you like (with neuro imput of course!) Does this help? Jas

kimcarlson

@kimcarlson

Hello, I"m in Japan and I take a "Gilenya" although here it is called "imasera". So far I like it much better than the injection I was taking, which was horrible for me. Not because of the injection part, but because it made me depressed. I want to take it at night, but my neurologist says it might be dangerous, so I take it at lunch time, although I want to take it at night. I've been on it for about 5 months now. I went to have an eye check-up after 3 months and it was OK, but I think I need another one, although my neurologist hasn't suggested it yet. Good luck with your decision.

najabu

@najabu

I have been on tecfidera since November. It was a hard adjustment, terrible side effects but I have been fine for 3 months now. It is not offered in the uk I guess so I'm trying to figure out what to do.

janep

@janep

I've been on fingolimod/gilenya for over a year now and I'm loving it! No side effects, apart from possibly a couple more colds this winter than normal. Having been on copaxone and avonex for a few years first I definitely don't miss the needle!. As others have said, at the moment in the UK you are only eligible to try the new oral therapies if you have 'failed' on an interferon (relapse rate unchanged or increased).

annmj

@annmj

Hi I I'm in Scotland and I'm sure I read recently that Aubagio has been approved as a first line treatment and should be available to anyone who wants to try it and meets the criteria for DMDs within 2 - 3 months. Although I did also read that the side effects were numerous.

Stumbler

@Stumbler

You are quite correct, @annmj , Aubagio is approved in the UK as a first line oral treatment for RRMS. There's some more detail here:- http://www.mstrust.org.uk/atoz/teriflunomide-aubagio.jsp ; and http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/aubagio