Hi. Just wondered if anyone has taken sativex before and if it was beneficial. I am taking my first spray tonight and feel a wee bit nervous! Any advice, anyone?!
Karen
Sorry, never tried it… but how did it go?
It helps my spasticity better than any other medication, but I only take it at night, as I find it makes me stoned, which I find embarrassing. No issues though, other than that I often wake up in the morning with a bad headache until I get some food and tea in me.
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Hi Kas1969, I sent you a PVT message about this, you might not have seen it, anyway I was only asking what part of the country you live in, as I’ve been asking for this and being told in England it’s not available yet, I live in Huddersfield West Yorkshire and I just wonder if its this area that’s not getting it, I’ve got a tlelphone appt with my nurse this Thursday and it would be good if I knew before hand, thanks in advance, x x
Hi
ive been on it for a few months now and find it really helps. The more you take it the more used to the side effects. I now take it 3/4 times a day. I also have found since starting it I empty my bladder a lot more easily. Good luck
Same here, loola, regarding the bladder issues! Does anyone else taking it find they wake with bad headaches? If so, any suggestions/remedies? Also any hope of NHS England covering the cost? I am paying hundreds of pounds for the vials…
ok, so where do you live that are taking sativex, I keep asking and no on is saying, the nurse and neuro keep telling me its not available yet, but it must be, is it only not available in Yorkshire ? please if you can left me know ASAP as I speak with the nurse on Thursday the 28th and would love to go and say…well in so and so their getting it, x x
Hi Jean
I live in Gloucestershire and was told by the Neuro last October that I fit the criteria for sativex.
He told me to ring the MS nurse in 4 weeks time to arrange, which I did only to be told they have not heard anything yet. I have since phoned the nurse twice to be told the same!
I think we have more chance of getting blood outnof a stone than getting sativex, but I hope you get better news when you speak to your nurse.
Pam x
Hi Pam, thanks for that, yes I too was told I fit the criteria, but can’t have it yet, so where are these people living who are getting it ? x x
FES device. I had foot drop (left leg) at an earlier stage of my PP. I invested in a Functional Electrical Stimulation device and I found it useful. I now have this rather expensive equipment going begging. Does anyone need one? I have the whole kit including spare electrodes.
Hi Andywhitfield I think you would be better starting a new thread with this as you’ve tacked onto one about Sativex.
Hi, so I have my telephone appt tomorrow with my MS nurse, can some one apart from Pam please tell me where you live so I can put my case forward with the nurse, x x
Hi
i live in London. I had to be referred to UCLH because St. George’s won’t fund it yet. I think it’s up to the CCGs in your area to decide. Might be worth writing to your MP about it and the fact you can get it in some areas and others you can’t. Is outrageous this still happens. I thought they had put an end to postcode lotteries
Hi, so spoke with my MS nurse on Thursday, it would appear my MS has progressed, she 's ordered a spine MRI because of how bad my back is, painful/spasms/stiffness, she feels I’m progressing off old lesions and the time I’ve had MS (nearly 14yr) she said the symptoms and severity to which I’m getting them is normal for SP…anyway I did ask about Sativex and why some up and down the country could get it but not us in Yorkshire…so just before lock down they were starting to talk about people in Yorkshire and the Humber getting it, but because of Covid 19 it’s been but on hold 
so I’ll just have to wait, in the meantime I’m going to try Dulexotine, see if that helps with the nerve pain, x x
I think it’s outrageous that there is still a postcode lottery for these drugs!! Ask to be referred to UCLH and get it. You might find it’s worth the travelling. Good luck and I’d write to your MP about it
Hello there people!
My neurologist is applying for a licence for me to be prescribed sativex (Irish Republic here).
Just wondering how you are all doing with it? Still taking it, anything to report? Good or bad.
Hi Poppy,
I’ve experimented with Sativex a number of times over the last 2 years, unfortunately it did nothing for me, in fact I’d say my mobilty was worse whilst on it.
I can still get on repeat prescription if I wanted to but like I say it had negative results me so I don’t bother.
It’s madness and unfair that we in Wales can get but others in the UK cant, totally wrong, at the very least everyone should be given the chance to try it.
We cant get it either in Calderdale. West Yorkshire
Boudsx
That’s disappointing jactac. I have no expectations to be honest. My ms progression has been rapid and constant from the start. I’m now experiencing frequent, painful spasms and need the wheelchair at all times. Baclofen has had no effect in any way. Sativex was suggested. I’m more than happy to try it. It’s only a available through the health service here at a fee. Again, I’m willing to pay and try it.
No harm in trying it Poppy, I hope it works
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