Does anyone get Sativex for the treatment of Fibromyalgia?

[ozzie]

From my research on fibromyalgia I have found that it is caused by endocannabinoid system malfunction.The endocannabinoid system is a new discovery and it is believed that most modern chronic illnesses are in some way connected to failure in this system,including MS,Crohns Disease and ME and many more.It is called endocannabinoid because the chemicals in cannabis are the same as those produced by our own bodies,almost like an identical twin.I have been prescribed for the last 18 months a new drug made in this country called Sativex.It is pure cannabis dissolved into alcohol and taken as a mouth spray.The maximum dose is 12 sprays a day and 3 sprays is measured as the equivalent of a mild cannabis joint.When I took this to the local fibro group(I was the only one still walking unaided)they were shocked and hadn't heard of it.There has been a recent study carried out in Germany that showed this spray worked for fibro.Now I have moved and had to change doctors I have lost my prescription due to costs.As far as I am aware cannabis is a very good medecine for illnesses that are endocannabinoid related and I would suggest that anyone who is interested research it.I would be interested to know if anyone else has sativex for fibro or uses cannabis to treat it.

[kraftyk8]

Until Jun 2010 Sativex was only available to 1200 people in the UK on a named patient, unlicensed basis. It is now licensed but only for the treatment of neuropathic pain in MS. That should explain why nobody at the FMS group had heard of it. As with a lot of really useful medications, I expect it will be a long time before anyone asks for the license to be extended to cover any neuropathic pain and then for a decision to be made. It doesn't help everyone and there are lots of conditions that FMS sufferers also have, that would preclude them from taking it. I think you'll be in for a wait before you can get another GP to prescribe it.

[Bess]

When I was referred to my pain clinic , the doctor there is one who prescribes above for MS and said he thought it would help me but unfortunately was unable to prescribe other that for MS but suggested I use cannabis, as not wanting to break the law and gave up smoking years ago I would not entertain it untill it was prescribed , I looked up savitex to see cost and it was £500 for 3 doses I think prescription is a long way off !!

[ozzie]

Lynn-FA,I will pm you with my details but just so everyone else ca read it,no I don't have MS.I have complex ptsd(slightly different to standard ptsd) and fibromyalgia.I grew my own cannabis and treated myself for 10 years prior to getting Sativex.In Holland I could get it in prescription and so I researched and grew the varieties that are given for fibro in countries where it is legal.Currently there is a lot of controversy over sativex as it is a red flag drug,in order for it to be legal the Misuse of Drug Act needs to be changed and move it off a schedule one.This would mean that in it's herbal form cannabis would then be legally recognised as having medical value and the government does not want to do this.Herbal cannabis grown in Holland is prescribed and sent out all over Europe for Fibromyalgia and many other chronic health conditions.The company is called bedroccan.This is also the same in at least 16 states of America where cannabis has a long history of being used as a prescribed medecine.Interestingly the same company that is involved in the manufacture of sativex(Bayer) were also the ones that first made Heroin from opium and presribed it to people.

I have one more box of this spray to pick up before I have to change doctors.

There is a struggle going on in this country for the right to use cannabis as medecine and the Home Office has stated that it recognises that for some chronic pain conditions cannabis is a good medecine.They have said that for this reason we have Sativex.I went to my doctor as someone who was being forced to break the law and when the medecine became licensed asked for a prescription.It was actually a psychiatrist who recommended I be given it who also said I could have the full 12 sprays but due to costs I could only get 4 at a cost of approx £125 a bottle.It is the most expensive cannabis in England.

Personally I think the herbal variety works better,note there are many different types of cannabis.Some will make you sleep,some are good for pain,some help with nausea etc etc when you start to look into it the list of things it can treat goes on and on.

The fact that we are now getting it in the form of Sativex to me shows that all this evidence is true.My own psychiatrist has told me that there is no proven link between cannabis and scizophrenia and it has no overdose potential.It's not toxic to your organs.In fact I have an email from GW Pharmaceuticals who make sativex saying there is no evidence to support the ideas that it damages your brain.

So therefore I have grown my own and had a prescription for the same thing which I have now lost and I am not going to wait another lifetime in pain for politicians to come up with what they see as a solution when in Europe they already have the solution.Prescribed herbal cannabis at a price far more affordable than Sativex(which is available by private prescription)

[ozzie]

Bess you don't have to smoke cannabis.I use a vapuoriser which is more effective for treating pain,you can also eat it.Look up volcano vapourisers,they are widely used for medicating with cannabis all over the world.

Ps cannabis also cures many types of cancer and the American government discovered this in 1974 and then stopped all research.If you are interested you can find a lot of info on the net,look up the endocannabinoid system and Professor Robert Melemede,a leading researcher.

I would say that street cannabis varies in it's quality as a medecine and the black stuff people call 'soap bar' has no medical value.

In view of this and the cost of developing it in the forms of sativex I would say that the government should adopt the solution they have found in Europe,cannabis in it's raw form,far cheaper than the pharmaceutical version.

[fiona]

I realise this is an old topic but...

Two years later, has anything changed? Have you heard of anybody with ME/CFS/Fibromyalgia getting sativex prescribed?

I would expect if so, a private prescription, not a GP prescription.

Is it mainly MS patients who get sativex prescribed?

It would be better than the illegal versions. Plus you'd get advice about how much to use, so you don't overdo it. You'd be aware of the potency being 1:1 ratio of THC:CBD. Whereas with illegal cannabis I wouldn't expect you'd be aware of the potency.

By making sativex so unavailable, or perhaps available if you are ill with MS only, it's almost pushing people in the wrong direction. It concerns me about sick and disabled people buying street cannabis.

We are in times where hemp based CBD oil or tincture is available. But it seems that generally for cannabinoid there are limited options in the UK.

[April47]

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