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Nice and Sativex today

NICE have ruled out the prescribing of Sativex by NHS England today.

what will that mean for me? I’ve been on Sativex prescribed by the NHS for five years. Does this mean it will stop?

that’s awful for you and others who rely on sativex.

one friend gets his prescribed by his neuro so you can but ask.

otherwise look out for shady characters on street corners and try the illegal stuff (joking).

@ marya,

Do you find that Sativex works for you ? I’ve tried it 3 times now and just dont feel any benefits what so ever ?

Maybe I’m just not getting the dosage right .

Hiya - yes I tried Sativex for 1month but didn’t feel any benefit! Although maybe 1 month wasn’t enough. But I had to self finance as my Neurologist and local MS Nurse told me there was no funding! xx

It’s an absolute shocker. To be honest, cannabis is not something I’ve found helps me. But I know it helps other people with pain. The worst aspect of this week’s news is that NICE have once again (in draft guidance) banned cannabis based medicines for people with uncontrolled epilepsy. It was children with epilepsy who made them change the rules initially, so now they’ve backtracked. The final guidance will be issued on 5th September.

This is the link to the NICE guidance released on 8th August: https://www.nice.org.uk/news/article/nice-draft-guidance-and-nhs-england-review-highlight-need-for-more-research-on-cannabis-based-medicinal-products

I have no idea what happens to people with an existing prescription for Sativex.

Sue

after 10 weeks charring x pain clinic have pulled the plug on sativex

i was feeling the benefit with more control over my spasticity so

i am gutted that my supply runs out in 3 days and wont be renewed…

hmmmmm what next

It either works or it doesn’t. You would know if it helps you in the first week of taking it. How many sprays have you been taking?

one month would be enough to find out if it helps you or not.

I’m prescribe Sativex by Charing Cross too. Why ware they stopping yours?

he told me the hospital are no longer able to cover the cost.

Which consultant do you see?

Hi

Have you been offered or have tried Botox…3/12 injections.?

Good results in turning off spasticity for me

.

I talked to my neuro about sativex i live in the cotswold. He said the main issue over it is the FEEDBACK coming from patients it is not good and shows no really improvment and so therefore this is an excuse for pharma and NICE to pull the plug on it as its expensive. I assumed that is what he was trying to say to me. which makes sense. He said there were cheaper options which are already in play, like baclofen and all the other pysch drugs they use to manage it.

Sativex seems to be a bit of disappointment or people are not coming forward with positives for it. reading above i would see there are more NEIGHS then YAYYS towards it.

He also said they his colleagues were interested in cbd oil, but AGAIN patients are not coming forward with good positive reviews. i suppose it makes sense. maybe they need to do more block testing of it.

I have spoke to several people on it and they are not impressed.

its difficult. its not cannabis per see its a deriviative. Not being funny but my friend who shall remain nameless buys her for less then 10.00 and makes edibles out of it, and it works for her. You can buy edibles now online. google shows the way. Its a ton cheaper and the people i know now using cbd oil have moved onto it. they seem happier who knows it might be all in the head.

but perhaps sativex wasnt tested with enough different people. anyone on it though I feel for them if it is working, but talk to GP as there may be a way to get it from out of your health district.

i was disappointed as i did ask about it. My neuro is pretty up front with me, and would have said if he was annoyed he said he wished more people had reviewed it.

I think parliement are looking at making cannabis legal for proven medical reasons, there could be hope around the corner yet.

oops that wasnt meant to be anonymous and i cant change it, i have shaky fingers this morning.

The big problem is CC, that NICE are ruling out all cannabis based medicines. So while Sativex has always had less than sterling reviews (for some people it works, but for many more it just doesn’t), the backtracking on all medicinal cannabinoids is disastrous.

It means that big pharma will see no incentive (in the U.K. at least) in working on drugs based on cannabis. Or if they do, they won’t get the approval from NICE here. This is also one of the downsides of losing our EU membership. We also miss out on drugs given the OK by the European Medicines Agency (EMA). So it makes licensing drugs more expensive and take longer if we’re doing it all on our own.

So if drugs are to be licensed in the U.K., it will take time, trials and money. Then NICE would give them the thumbs down, based on their current thinking anyway.

Sue