Last reply 1 month 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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vixen
1 month 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


stumbler
1 month ago

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


watsoncraig
1 month ago

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


seanachai
1 month 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

http://n.neurology.org/content/neurology/suppl/2016/10/19/WNL.0000000000003331.DC2/2070.pdf

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.

https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=550eb76a-e4a6-4fa1-ad65-c0fd8b0ce783


watsoncraig
1 month 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.


stumbler
1 month 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! 😉


mlgilber1
1 month 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!


watsoncraig
1 month ago

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

@mlgilber1
There is apparently a compounding pharmacy a couple of miles from me so might give it a try

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