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Sativex?

Hi everyone

I have really bad stiffness and spasticity in both hands and right foot. It’s becoming unbearable. At the moment I’m taking Baclofen at close to the maximum daily dosage and Gabapentin, also at a fairly high dosage. They don’t seem to be doing much good though. When I asked my MS Nurse and neurologist they just recommended increasing the Gabapentin. I’ve tried this and it doesn’t make any difference. I’ve read about Sativex and wondered if anyone on here has any experience of it?

I don’t like pestering the MS nurse or neurologist as I know there are plenty of people a lot worse off with MS than I am. Should I just ask the MS Nurse about it?

Any comments or advice welcome.

Thanks

JZ

JZ,

l have been using Sativex for over 3 yrs. Since it first became licensed for MS use. For me it has made a big difference. Pain and Spasticity. ln last weeks Pathways mag there was an article about Sativex - page 8 - results of research presented at 2013 ECTRIMS saying Sativex does not effect driving ability - improves MS spasticity without effecting patients abilities to carry out day to day tasks - including driving.

lf you do not subscribe to Pathways - it is a good bi-monthly mag full of news views and ideas. MS-UK [was msrc]

l bought it privately at first - GP gave me a private prescription - neuro all for it - then l got it on the nhs 3yrs ago. Use about 5sprays a day. 90 sprays in each phial.

Hope that gives you some help.

I’e discussed this very thing with a GP, my Neuro & my MS nurse.

Because it’s not NICE approved you have to jump thru hoops to get it :frowning: Uness you have a smart GP that’s happy to prescribe :wink:

I just came off Baclofen and have had blood test and started on Tizanidine. I wasn’t even taking a high dose of Baclofen, but would yawn so hard (at work!) that tears would run down my face and within a few days of increased dose at bedtime, my legs started giving way.

I don’ know how you can cope on max dose so I hope you can try it.

It’s not like it has any ‘funny business’ going on, as it’s safe to drive with it! A GP at my surgery said he completely understood my thoughts but as it was a specialist thing, he’d need the nod from my Neuro before prescribing.

I think as they take a few elements from a herb in a medication that’s aimed at MS sufferers, it’s ludicrous it’s so hard to try.

Good luck

Sonia x

Sonia,

l went through the baclofen/tizanidine route - both meds left me very weak and feeble. As for driving - there was no way l would have been able to get up and out to get to my car - certainly not fit to drive. My driving license means everything to me - no way will l put it in jeapody. 49yrs no claim. With Sativex - you do not need regular blood-tests. l know my dentist - who always keeps a record of what meds you are on - did say that both baclofen/tizanidine cause bleeding gums.

l think Vitd3/magnesium/also help - alongside stretching exercises like Pilates/Yoga and Tai-Chi.

SATIVEX…Two people …same Neuro…Two different Health Boards…Live 14 miles apart…Location,location!!! Keep at them !

Thanks for your replies. Much appreciated. I’m going to speak to my MS nurse and she what she says.

JZ

Spacejacket - started Magnesium a few days ago :wink: I hate how feeble I’ve become, it’s made me wonder if it is the meds or just that I’m getting worse?!

JZ - best of luck, let us know how you get on :slight_smile:

My MS nurse did say it was all about building a case, so as annoying as this is, I’m going to try… who knows, the tizanidine might even work! I just can’t help feeling doubtful about that. It’s so incredibly hard to carry on working on those meds.

Sonia x