Last reply 2 months ago
Cost effectiveness

Getting extremely (insert expletive) offed.

Cant get Ocrevus on the NHS, cause it’s not cost effective.

Had a bad walking day yesterday, struggled even with the wife on one side and my mate on the other. Done a bit of Googling and see that there is medication out there called Fampyra (can’t say it without going all Bram Stocker) that can assist with walking, and guess what

Cant get it on the NHS, cause it’s not cost effective.

FFS I have PPMS and could benefit (possibly) from these but it’s not cost effective to treat me, but if I was a junkie I would get loads of treatment…..

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6 months ago

Hello @watsoncraig. I share your frustration, as it’s the same argument with Ocrevus, right? I didn’t realise Famoyra was an issue for prescription with PPMS folk. You could go to the MS Society and see if they can advise you on ways around this, for example, getting funded for a private prescription. My sister is PPMS and me RRMS, the difference between how we are assisted in terms of ongoing care and treatment is quite frankly disgusting, and is the reason I went on my mission to Parliament last month (still waiting to hear back about that, too. Hmmmmm) Keep your spirits up, we share your frustrations. Definitely write to your MP, keep up a good diet with exercise. And keep hoping forchange in attitudes………x

6 months ago

@watsoncraig , it is frustrating. Us MSers are just too elite………… 😉

6 months ago

Thanks guys. Who’d have thought I would be one of the elite 🙂

6 months ago

Hi @watsoncraig

I would suggest researching Rituximab…. there is quite a lot of contention on Ocrevus simply being a rebranded version of Rituximab… I am not taking sides on the subject and suggest you read up.

Results are mixed, one theme suggests younger PPMS with inflammatory lesions do better.

One interesting bookmark I had

there are lots or material out here..

As for Famprya, suggest reviewing the results and see if the risks are worth it…. note the name is different in US.

6 months ago

Thanks all. The SMC (Scottish Medicines Council, Scottish version of NICE) are due to publish their update on Fampyra following a re-submission today.

According to their own info the cost was £4706 per year for the tablets!!! £4706 to potentially make me more ambulatory would be chicken feed.

6 months ago

@watsoncraig , I thought Fampyra was about £200 a month.

It’s no wonder the NHS are running out of money if they negotiate prices like that! 😉

6 months ago

Hey! I’m so sorry you’re having trouble getting the medications. I’m part of a Facebook page for people on fampyra and a lot have trouble getting it so they get 4-AP from a compounding pharmacy for a pretty low price. Do you know if that’s an option? Best of luck!

6 months ago

If it is £200 per month that makes it even more troubling.

There is apparently a compounding pharmacy a couple of miles from me so might give it a try

3 months ago

hi craig i share your frustration as i am PPMS as well , i went on local T.V. last year to raise the profile about the NICE decision ,and would be interested if you find any way around the current situation , good luck , keep fighting.

yours hank

3 months ago

@watsoncraig All may not be lost as we often fall into line behind FDA recommendations. They have approved Ocrelizumab for RRMS. NICE need to be asked to explain why the Americans are incorrect and the reasons that they have decided not to fund it for RRMS.

The way NICE is challenged often gives them the wriggle room to slide out of giving an accurate answer. Because Ocrelizumab is a novel compound – and very hard to formulate correctly – it will be a while before there is a generic.

Have you though about discussing it with your neurology team regarding off-label prescription? I am not sure what barriers there may be (NICE makes off-label cannaboid prescribing very hard) to this. In theory a doctor can prescribe a medicine outside of its approved indication. I am prescribed Modafinil for fatigue and cog-fog although that is not its licensed indication.

@seanachai – Ocrelizumab it quite close to Rituximab in mode of action but they are not identical. For starters, they’d share the same chemical name but likely have different brand names. Dimethyl Fumurate (Tecfidera) is a longstanding molecule that was repurposed for MS and given a new name. It is rumoured that a dermatologist (it was a skin drug owned by a v small Austrian firm and approved in Europe) noticed changes in patients with concomitant MS, mentioned this to a neurologist and the rest is history.

A Ferrari and a Lamborghini may take inspiration from one another and are both supercars, however, they are not identical.

2 months ago

Went uclh hospital for fez checkup. People travel from all over met a lady from Buckinghamshire. They have another clinic in Salisbury. Cant, you be referred . A splint works pretty darn good too. Hope you get somewhere. i’m 2ndry progressive and walk slow 10 metres just qualified to try frampra. 1st med i’ve been offered. You have to be struggling or your not eligible.

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