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Sativex

Nothing I take seems to ease the pain in my legs. My GP has agreed to to a private prescription of sativex so can try it. Local phamacy quoted £564 and Boot £450, Will get another quote tomorrow. Has anyone managed to get it cheaper and any suggesions how long it will last.

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try contacting the company that produces it , i beleive they give you a months free trial and then you can decide, but maybe within that month you could see if you can cope with it, also you would need Neurologist or MS nurse to sign it off I believe the company is bayer

trish

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Sorry I can’t help on this, but I do believe its still a postcode lottery on who gets it.

Hope if you manage to get it, that it helps you.

Pam x

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I tried a private prescrption and it was great. This was when it was first came out before it had approval. The GP I had at the time sorted it all out…she was brilliant, it involved a lot of paper work back then…she actually had to apply for home office approval…its much easier to obtain now if you are prepared to pay. The practice actually obtained it for me…my memory is terrible but I do recall it was in the region of £250. I can’t recall exactly how many bottles were in the pack…it could have been four. I do remember that there were about 40 sprays per bottle…obviously how long it last depends on how many squirts you use per day. I also remember that it didn’t seem to last awfully long. As much as I felt it helped I didn’t continue with it as I worked out to be more costly than the real McCoy!

Back in those days I was more able to travel…if you fly overseas with it you must carry a letter from your GP.

Sorry I can’t be more helpful but what I can say is that if I could get it on the NHS I would jump at the chance. I have moved house since then, when I asked at the practice I use now if I could have it…on private prescription or not…they treated me as though I was trying to get hold of heroine!

It is utterly disgusting that we cannot obtain something that helps so much just because we don’t have the right postcode.

I wish you the very best of luck…would be keen to hear how you get on.

Nina x

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Yes, I’m taking Nabilone, I had no idea it even existed! I have to get it from the rehab consultant and collect at hospital pharmacy - my GP won’t get involved. But I understand it’s licenced in Scotland

Sonia x

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I have no experience of Sativex but I get severe pain in my legs and its treated on the nhs with Gabapentin and Amitriptyline. Don’t know if that’s something you’ve tried?

Cath xx

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£400-600 per precription; blimey! Makes my £8.99 for a months worth of baclofen seem a bargain. This is one of the reasons I worry about trying anything else to ease symptoms…the cost!

Myy personal opinion is, if there is medication that helps symptoms of ms, then you should not have to buy it, it should be available on script.

Coping with ms is hard enough without adding extra stress.

Pam x (just got down off the soap box!!)

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Thank you for your replies. The other quote was in excess of £500 so I went to a different Boots as it was more convenient and, after the pharmacist investigated, he came up with an estimate of £675. He suggested that I try the pharmacy in the next door Morrisons or go back to the original Boots . I called at Morrisons and got excited when he quoted £370 but he then found he could not order it because of protocols with the type of prescription I had. He said he would investigate and has just rung, after two days, to say it has been ordered. I will let you know whether it gives me any relief.

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And I thought £8.05 for a normal prescription was a bit steep!

I hope the medication is worth the hassle and that it works for you.

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It should be available free on NHS to everyone. Disgusting that it’s not!

Good luck… hope you get it cheaper and fingers crossed it gives you some relief.

Pat xx

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I was also doing research on Sativex as my leags also give me pain and I also suffer from crazy spazms. Now my Neuro is going to inject my muscles with Botox. I’ve heard positive reports. I go this Sat.

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Hi Dazign

Fingers crossed for Saturday, hope it all goes well for you, and the benefits are good.

Not sure if you are new to the forum, so if you are, welcome.

Pam x

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Hi, good luck for Saturday. Really hope it works for you. Let us know how you get on.

Welcome to the forum.

Nina x

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Good luck and yes, please report back as my rehab consultant mentioned it might be an option for me

Sonia x

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how disgusting that we should have to pay for a drug that helps us sufferers of ms

looks like i shall have to move to wales

​lozzie

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I was told sativex was no use for ppms by my neurologist, its similar to taking steroids to improve ms sufferers in relapse quicker the company that makes it are gwp pharmaceutical, unless they sold it to bigger company.

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Just to add, its cheaper to fly to amsterdam and visit a coffee bar, not quite the same but it cured my backache for a few days.i dont smoke and i dont like cake so probably not something i would do on a regular basis! Oh, and i live in uk and you cant get it over here… can you?