Forum

Gilenya

I’ve been turned down for DMD’s although the fact I can’t walk particularly well leaves me quite bemused. Having read about Gilenya it sounds worth a try but I believe it’s quite expensive, do you think I could go without my neuro’s recommendation of nothing and get Gilenya privately and swallow the cost myself. Or is this going to cause everyone’s nose being put out of joint?

I just don’t think it will be possible, full stop. You can’t just buy it, without a prescription from a neuro. If you can’t find a neuro to back your case, it isn’t going to happen, regardless who’s paying.

I suspect the fact you can’t walk very well may be the reason you don’t qualify for DMDs. I think all of them - certainly all the firstline injectables - have a minimum distance you must still be able to walk. Harsh as it may sound, I think the reasoning is that administering them once you already can’t walk would be closing the stable door after the horse has bolted, so to speak.

I think the distance for Copaxone is not as great as for the interferons, so people who don’t meet the walking criteria for Avonex or Rebif might still be OK for Copaxone.

Have you asked why you don’t qualify?

Tina

Yes many times, just keep getting told I have to have 2 relapses within 9 months which mine hasn’t been, seeing a different Neuro next week as my specialist has passed me on now! So will speak to him about options.

I don’t know where the two relapses in 9 months has come from! For Gilenya, possibly (I haven’t checked). But for the traditional DMDs, it’s two clinically significant relapses in two years.

Two in nine months would be more than double the required rate! Still seems more likely you failed the walking requirement, whatever he is saying.

Tina

Sorry it was 9 months apart. If I failed the walking requirement why wasn’t I given DMD’s when I could walk?

What is this walking requirement? I never did any of the sort and i was offered gilenya over rebif.

You do not have to be able to walk very far (it’s metres, not miles), and it may not apply to Gilenya at all. But so far, Gilenya is only usually offered to patients who have tried one of the interferons, without success. Your case must have been an exception, Sheriff.

If it’s completely obvious the patient can walk far enough, it may not be physically tested. But I was quite literally marched up-and-down the hospital car park (exhausting and highly embarrassing), to check whether I would qualify.

If it’s clear the patient can’t walk, it might be just as pointless doing the test as if it’s clear they can. I shouldn’t think they’re going to force someone out in the car park to check, if they can’t even make it down the corridor.

I still think being unable to walk is a plausible reason someone might be turned down for firstline DMDs. As is not relapsing frequently enough. But the criteria for the latter are definitely two in two years, not nine months, as Louie has apparently been told.

So either this was just plain wrong, or the neuro must have been talking about something else, and NOT Copaxone or the interferons.

Louie, I think you need to query all this with the new bloke, this week. Why are you being handed over anyway? Is it possible the neuro you’ve been seeing is not an MS specialist, and can’t prescribe DMDs anyway (not all of them can)?

Tina

Well he was supposed to be a Neuro specialist gave me my MS diagnosis 11 years ago. Hopefully this new guy will be better.

Thanks Tina. Im still trying to learn about all this.

Yes, I had changes between my 2 brain mri which were 3 months apart. RRMS in Nov 12 became rapid, or highly active as they call it in feb this year.