Hi Guys,
Did any one happen to watch BBC1 this morning? The programme was about MS and a drug called Sativex. The lady that was taking it said it had changed her life, no more tingleling or spasticisity, less fatigue and she felt a lot better. Had taken a lot of pressure off of her husband. Just wondered if anyone on here had taken it and were there any side effects and last but not least is it a postcode lottery?
Janet
Hi Janet, I do take it but had to obtain it privately. It helps the tightness in my legs and takes the edge of my stiffness, it does nothing for my poor balance but it’s not supposed to help balance. I don’t have fatigue or pain so can’t comment on that. It’s better than baclofen or zanaflax for me. It costs £412 for 270 sprays. I take one or two sprays a day. It is cannabis based and it makes me high so I can’t take too much, I also have to drive to work so can’t take it until I get home and won’t be driving again. Cheryl:)
Thanks for reply Cheryl, since seeing it my OH has been on at me to see if I could look into what it actually is and what it does for someone else. I do suffer with fatigue and pain along with the stiffness and balance so maybe I’ll have a chat with my neuro when I see her in May.
Once again many thanks.
Janet x
Hi Janet,
I’ve been on Sativex for almost three months now to relieve stiffness in my legs and butt. I also take baclofen which was helping but not enough and my MS nurse suggested Sativex instead of just increasing the Baclofen dosage.
I had to have a specific (Ashworth) assessment of the spasticity in my muscles which our local neurophysiotherapist carried out. My neurologist then prescribed a Sativex trial for me. I had another Ashworth assessment after 6 weeks on Sativex and the stiffness was loads better. On the basis of that, my neuro was happy for me to continue with the drug.
It has the side effects you’d expect from a cannabinoid drug, with the exception of the munchies ! I started with one spray in the evening and increased it according to the instructions provided. I have settled on three evening sprays which relaxes my muscles overnight but allows me to go to work the following morning. When I tried a spray in the morning I found that I was away with the fairies - fun when you’re a youngster and at a party maybe, but not when you’re at work.
I sound like a legal junkie when I tell you I take Gabapentin & Amitriptyline for pain and Baclofen & Sativex for spasm/spasticity - but it keep me doing the job I love and paying taxes.
Good luck with getting your medication sorted out. I know how terrible it was before I got pain relief
take care,
Lisa
Hi Lisa,
Thank you so much for your reply, it sounds as though I do need to speak to my neuro about it. It rather scares me to think I’d be away with the fairies especially at my age (65) and if it is habit forming, that’s what would worry me?
Janet x
been taking it for 18months now. Helps with spasticity in my right leg so I can sleep at night.
also helps take the edge of the Neuro pain in my arm.
either have 3 or 4 squirts in the evening. Stuff tastes vile & does sting when you squirt it under tongue.
get the feeling of being spaced out & occasionally the munchies 
Thanks Shoei for your reply,
This will probably sound like a stupid question but what are the munchies:-) ?
Janet x
Hi Janet.
Can only agree with your other posts,in that that it helps me with spasms and little bit of pain.The munchies is an urge to eat,not a major problem,apart from that i have know side effects,apart from the taste.What time was it on at may be able to watch it on catch up.
Take Care.
Chris.
Hi Chris,
Thanks for the explanation, thick or not am I? It was on BBC1 at 9.15 called postcode lottery. Hope you manage to get it to see for yourself.
You take care Janet x
Hi Janet,
Just watched it,and it sure is a postcode lottery.
Just glad my PCT funds it.
Good luck in your search for an answer.
Chris.
Hi Chris,
Will have to wait until I see my neuro in May, not long to go, she says hopefully!!!
Glad for you that your PCT fund it.
Take care,
. Janet x
I have to travel to another hospital & see a neurologist there to get my sativex.
my local PCT won’t pay for it, so its just a 40 odd mile round trip to get it.
l am one of the lucky ones - my GP prescribes Sativex for me since June 10 - when it was first licensed for ms use. Before then l did get it on private prescription. l take 4 sprays before going to bed - helps with spasticity and pain so l can get some sleep. lf you google Sativex you will get lots of info. And l have never had any side-effects from it - unlike Baclofen and Tizanidine which just about switched me off - l could not function on them. l do also take LDN - and the two meds have worked wonders for me. l am 64 - and have had spms for 30yrs.
F.
Hi Janet,
I just checked in the booklet that came with my trial vials of Sativex and it says studies have not shown any addiction problems. Everyone reacts differently so you have to record the time of each spray and any side effects, in a diary they give you, as you work out what dosage works for you.
I haven’t had the urge to snack and have actually managed to lose over two stone (deliberately) in the 12 weeks I’ve been on Sativex.
The worst thing is the taste - which I think is a way of discouraging mis-use. How they can describe it as mint-flavoured is completely beyond me !
take care,
Lisa x
Hi Lisa, that’s good news to me that the studies have not shown any addiction to it. Also if you can lose weight as well that sounds great to me as I’ve put on over a stone in weight ( but then I am on daily steroids which doesn’t help). If it works and reading all your posts it seems to I’ll put up with the taste mint or not. The diary thing sounds like a good idea.
Thanks for all your replies I really appreciate it…just one more question…do any of you live down south?
Take care
Janet x
Hi Janet, im in Scotland. Cheryl:)
Hi Cheryl, this is why I’m beginning to think that it is a postcode lottery and something I won’t be able to get. Have to keep my fingers crossed, as I couldn’t afford £417 just like that as my pension wouldn’t let me. Thanks for reply.
Janet x
Hi Janet,
I’m in East Berks but Sativex was prescribed by Imperial College Healthcare Trust.
L x
Thanks to you Janet - l did get to see the programme on bbc iplayer. What l found interesting was the comment by the neuro who said that there was evidence that Sativex helped slow down progression.
My OH went to pharmacy this morning to get my repeat prescription of Sativex - only to be given a form from the medical centre stating that Sativex was not available on the nhs. l have been getting it since June 10 - So he spoke to the pharmacist about it - and it turns out my GP is away - and another GP in the practise refused it. So the pharmacist has put the prescription request back in to the surgery and marked it as to be seen by my GP we she returns. l shall run out of the spray by the middle of next week. Keeping my fingers crossed that alls well.
After the ‘Postcode Lottery’ programme - l should think the GP’s will be inundated with request for Sativex. l have SPMS-so l have never been offered DMD’s - which cost the nhs thousands of pounds for each patient - and l have only ever had one MRI - when l was diagnosed 30yrs ago - and that was done privately. So its not that l am costing the nhs a vast amount. A box of Sativex can last me 3months.
Anyone who has not seen the programme - do look at it on lplayer March 7th 9-30am.
F.
Frances, I’m going to look for the programme on iplayer. Hope you get your prescription sorted out. Cheryl:)