I have a well-meaning family member who is urging me to approach my GP regarding Sativex for my SPMS. Frankly I think I’d be laughed out of his/her office (depending on which partner I saw in the practice.)
I understand that you have to have tried other drugs (eg Gabapentin? Pregabalin?) first before Sativex is considered, and even then it depends on your particular health trust area.
I’ve explained that I don’t have a great deal of pain and only some spasticity and I don’t want those drugs because of side effects (have some previous experience with Pregabalin) and because I can manage without them.
I’ve sent her up to date snippets from the MS Trust’s items about Sativex.
Any experiences on here?
There were a few more details on the Barts Blog yesterday.
This is how I managed to get on Sativex.
Approached MS clinic to ask about starting Sativex
They made an appointment with spasticity consultant who could prescribe Sativex on a trial basis, (only certain consultants can start you on the trial)
Had an appointment with spasticity consultant who went through my meds that I had already tried, baclofen, Gabapentin, Pregablin ect…
Put onto initial 3 month Sativex trial.
Returned to consultant to assess progress, possibly some improvement in MS symptoms ?
Another 3 month trial to asses further improvement (apparently there must be a significant improvement, but I wasn’t really showing a significant improvement, however I was told I could go onto Sativex)
Consultant writes to GP to authorise Sativex on prescription
GP adds Sativex to repeat prescription.
Different health authorities may have different protocols ?
18 months later, no noticeable improvement, dare I say that it possibly makes my mobility worse ?
Stopped the Sativex !!
I would suggest that Sativex MIGHT help more with pain or spasms, but as for offering better mobility, which is what I wanted it for, then unfortunately it did nothing.
Both my MS consultant & specialised nurse have very mixed feelings about the success of Sativex to help with MS.
Thanks for the very helpful replies.
I’ve emailed the Consultant’s secretary at my hospital to ask but won’t be holding my breath.
HI anon well i saw my neuro about ocrevus he mentioned sativex. he loves the way i deal with my PPMS with my own efforts and my own way of dealing with it. He did say a lot of these drugs just mask the issues yes some help but sativex he is not impressed with the feedback over it at the moment as for PPMS etc its not improving mobility and only slightly making a difference with spasms which really other drugs have a better feedback.
he suggested duloxotine but i had already tried it. i said to him i think i will just put up with it all for now. yes i have awful pain but i know how to deal with it. I keep my mind active by doing other things. its odd as those pains i can cope with but i have eye issues now in growing eyelash and now on the other eye a sty and its driving me nuts i feel like a child lol.
never had a sty in my life. its those things that get to me the worse lol.
anyway my neuro was not impressed with the feedback about sativex.
@ Crazy Chick,
My mother always told me that having a sty is a sign of being “run down” !
I used to suffer unbelievably from mouth ulcers, to the point where I sometimes had to have my food liquidised, again this was put down to being a sickly run down kid !!
I would get them often when I was a kid, along with nearly every other illness that was going.
They say bath with a cold tea bag.
Another very very good medication is Golden Eye Ointment, probably get it in Boots or your local chemist.
I am currently lucky enough to be using Sativex prescribed by my Neuroligist at my local hospital and I am also lucky to be living in Wales also. You have to meet a certain criteria, namely, that you have to have exhausted all other drugs and also have to score highly on the spasticity scale which is done upon examination. This drug really does help and I wish you good luck on your journey
saw neurologist tuesday, Sativex is now free for all…my neuro wanted to see me to assess me as i am last stages PPMS more or less and do get a lot of weird spasms and neuo pain. He has offered it to me. will take about 4 weeks to get the prescription.
He said think about it, try it on low dose it does appear to help the pain and spasms in PPMS so he would like me to try. I knew that from last year after seeing the OT and neuro about my left leg and foot there was nothing more they could do for me and its just now a case of trying to make me comfortable. I am determined to stay on my feet though even if its just a small walk everyday and i mean small. I can barely stand a few minutes as left side is so weak, but hell this has been going on since 2006 lol.
so if anyone was interested in getting Sativex perhaps now is the time to approach your neuro team.
Morning, well it’s funny, but I’ve recently tagged this onto another message I put on recently. So like you I have SPMS, I have been on gabepenton for pain and have now come off it after many years as it no long has the desired effect, I tried prebagalin, side effects not good for me. I do suffer with a lot of pain and spasms and well as other issues, but it’s these 2 things we’re talking about, now, so I’ll stick to those, anyway I recently had to see my GP and brought this up in the conversation, as in the past I’ve spoken to my MS nurse and neuro and got nowhere, I was pleasantly surprised when she said that she would send an email to the neuro dept suggesting I be at least given a chance to try it and she would fund it, so you may not be laughed out of your surgery, what have you got to lose, I’m still waiting for their reply and knowing my neuro dept it will be them that say NO.
Hi i dont have SPMS i have PPMS a standalone MS. one of the rarer ones.
I believe its only the neuro who can prescribe it, they have to see you and assess you but go for it. why not. Mine seemed pretty positive i would get it.
really what have you got to loose. xxxx
Morning crazy chick, yes I realise that a neuro would have to prescribe it, my GP was just going to make contact to put me forward and stipulate that my surgery would fund it, to be honest I’m not holding my breath, I daren’t as I’ve been asking for this for an age, only to be told by my MS nurse that in the area I live in it hasn’t been given the green light, but hey like you say, what have I got to lose.
Thanks again Jean