Anyone 1 on been prescribed Sativex

Hi everyone.

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

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Hi 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

Pam x

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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

Hi Jean, I asked for sativex some time ago and again last year(Calderdale)…still a big fat NO!

Boudsx

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

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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.

Hope this helps.

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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.

Jean

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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.

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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.

Jean x

Hi Jean

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.

Pam x

Thank you, I dare not hold my breath, knowing my neurologist he’ll say no, but we’ll see.

Jean x