Its been a while since I was last on, I just haven’t felt well enough, pain and fatigue through the roof, anyway I won’t bore you with all that, because many of you know with progressive MS what I’m talking about. I just wanted to know how many of you on here have bee prescribed Sativex on the NHS, I’m guessing not many, if any, but I keep asking my nurse about it and getting nowhere, as she said West Yorkshire where I live where supposed to be having ameeting about rolling it out just before the 1st lockdown and of course the talks never went ahead and still haven’t. I’m due to have a face to face with my GP at the end of June and I will be bringing it up with her, so I just thought it would be nice to have some info on how others have gone on, thak you in advance.
Jean
Sorry to hear you have been struggling, wish I had a magic wand for us all.
I am in the same boat as you coss here in Gloucestershire Christmas time before the first lockdown they were close to trialling sativex on the NHS and I was told my name was put forward.
Since then I spoke with the Ms nurse who says that all came to a grinding halt cos of lockdown, and so I am still waiting but don’t hold out much hope.
Sorry I can’t be more optimistic but I really don’t think it will happen. Take care
Hi Sorry but I don’t know anything about sativex but I have cannabis for severe nerve pain I really wouldn’t be able to cope without it so if you ever get a chance to have some it’s amazing it’s terrible it’s not legal
Thanks for all your replies, I kinda guessed this would be the situation, it’s so bloody frustrating, I mean until we are allowed to try it, we won’t know if it works, but it would at least be nice to have the chance and hopefully get a chance at a better quality of life. For me at this moment I don’t want to take pure cannabis, as I don’t want the high, but who knows in time, thanks again and good wishes to you all,
Jean
Hi there,
Yes I was prescribed Sativex about 3 years ago, maybe longer ?
It’s still on my repeat prescription if I want it .
I have 3 bottles in the fridge now unopened.
I’ve given it a try a few times over the years but if I’m honest in my opinion it’s not all it’s cracked up to be.
The longest I persevered with it was around 5 months but I felt nothing in terms of better mobility.
It didn’t help with my walking at all, it did though make me woozy, nauseous and dizzy, not good if your prone to tripping up .
Here in Wales you get it by being referred by your MS consultant to an independent spasticity consultant, this process may of changed now ?
If I remember correctly you are then put on a 3 month trial with the spasticity consultant, if it shows to make an improvement, the spasticity consultant then informs your GP to add it to your prescription.
Even though we can get it here in Wales I think some GP’s are still reluctant to offer it even after being advised by the consultant.
In my case even though I felt very very little improvement during the trial period, if any at all, the consultant still advised my GP to prescribe going forward after the trial.
As far as mobility goes it did absolutely nothing for me whatsoever, but I can imagine it might be helpful perhaps to relax or ease pain, which was not why I wanted to try it.
My MS consultant and MS specialist nurse both told me not to expect too much from when they agreed to refer me over to the spasticity consultant, apparently they hadn’t seen many positive results in our clinic, but they were happy for me to give it a go, which I was grateful for !
Amongst other meds, at the moment I’ve just started combining Amantadine with Famprya.
I’ve been taking Famprya for a good few months with perhaps a bit of improvement, but about 2 weeks ago I added Amantadine and I think there is an improvement in how I walk and walking speed.
Early days yet though.
Thank you jactac, yes I was aware that people in Wales were getting it and that’s great. When I looked into it and spoke with my MS nurse and consultant they never mentioned about it helping with mobility, more for stiffness/spasticity and possibly pain, which is exactly what I what it for, I don’t know whether it will help, but I would at least like to try, as my pain now is quite bad and the stiffness and just getting worse. I been on other med’s, but they no longer have the desired effect, so no point in taking them… I’m sorry it didn’t work for you, hope you do ok with these other ones, good luck.
Hi there,
Have you considered Botox for stiffness ?
When I was referred to the spasticity consultant she actually said that Botox had better results than Sativex, and said it was on the table if I thought Sativex didn’t perform.
My issue at the time was heavy legs that was causing me trip, and got worse the more I tried to walk, so i though Sativex would help (it didnt).
I can imagine that Sativex could very well help with pain as it has the calming effect on the nervous system, hence cannabis working for epilepsy.
I think I was hoping for better mobility more than anything else.
Morning everyone, so had a face to face with my GP yesterday, I know shock horror, anyway there were a few things to discuss, seen as though I haven’t seen her for nearly 3yrs. I raised the topic of sativex as I suffer with pain, stiffness anyway my GP is sending a letter/email to my neuro dept suggesting I give it a go, she’s happy to fund it, so fingers X.
Firstly well done for getting an appointment with the doctor and second good news about sativex, fingers crossed you get to try it, I am so pleased for you.
I didn’t really pay much attention to the “availability” of Sativex…
My G.P. suggested I might be able to get it prescribed…
That was in 2019…
I got a very curt, shitty response from a Consultant in Rehabilitation Medicine…
I was offended by the off-hand way I was rebuffed but didn’t pursue if further because what’s the point…?
I hate the invisible team supposed to be concerned for my welfare…
In my darker days I plot, I find their addresses, and plan dread consequences for them… and those they love…
Then I smoke some of the lousy ditch-weed, that’s been grow in vast amounts locally, and I get on with my day…
In September I’ll be 10yrs on from DX in that time my world has changed completely, but the self righteous gate keepers & Polly-Anna Optimists involved with MS are still the same…
I totally get what you’re saying, I trust my GP with this, just not my neuro team, I still haven’t herd anything, mind its only been nearly 3wks. I’m 16yrs into my journey with this condition and I’m just getting worse and hope that given the chance to try sativex it might at least help with the pain and spasms, all I want it a chance.
Have the best day you can.
I shouldn’t get on my big horse over this as I’m not actually convinced Sativex is any good…
What does annoy me is the lack of access for those who may be able to form an opinion of it’s merits, or otherwise…
Now, many of us will be in possession of documents outlining reasons for refusing access…
Those documents have names on them…
I’ll bet non of those names have MS…
I don’t waste my time ranting about “broken systems”, those systems are maintained by individuals whose patronage & arrogance has allowed them to negate their duty of care…
So a quick update, I’ve just been referred to Sheffield hospital to be assessed for Sativex, has anyone else been there and if so what did they do, ask.
I enquired about Sativex to my MS Team and was told No. The decision is a local one in that pharmacy have not agreed to prescribe it at my NHS Trust (in England). The MS Team stated to the best of their knowledge it is prescribed from specialist rehab clinics and they don’t have a specialist spasticity clinic within their Trust. Also, the patient would need to have failed to respond to two other anti-spasmodic meds first to meet criteria.
Having not got on with Nortriptyline, Duloxetine and Gabapentin, pre-diagnosis, I’m waiting to see if they will refer me for a trial.
Hi, and thanks for your reply, I have been taking Baclofen for nearly 16ys for spasms and stiffness and can only take a smallish dose because a high dose adds to my fatigue, I used to be on Gabepentin, again after so many years this stopped having the desired effect, so came off, pregabalin made me feel suicidal, so came them. Sheffield hospital has a specialist spasticity clinic and thats where I’ve been referred to, I’m not holding my breath.
