some/most of you must have tried cannabis since diagnosis? for me it definetly helps!! but my consultant can’t prescribe it for me because ‘it’s too expensive!!’ yes putting it into a vapourising solution to be taken orally probably is so why bother? it grows and only needs water… it’s a ‘weed’ for god’s sake!! for me the best type of dope is ‘skunk’ which is straight from the plant - no chemicals involved and there are a variety of ways to ‘smoke’ it! i’m on the verge of buying a ‘vapourizer’ which heats the bud just enough to release the cannaboids but not enough to burn it, so therefore no smoking involved! if they just grew it and prescribed it to us, or even go the whole hog and legalise it full stop then they would make ££££££££££££££££££££££££’s and i for one would be a happier wealthier little bunny!
just wondered if it was only me thinking along these lines?
Ben, you are dead right.However ,the reason given for the refusal to prescribe Sativex to us is that the results of a trial ‘proved’ that there are no beneficial effects.That’s that, as far as the NHS is concerned.I’ve got it in writing from one of the World’s leading pain specialists that the trial was flawed …But the results suit them,so they save £millions, and we suffer.
There is paranoia throughout the NHS regarding Cannabanoids,so they won’t prescribe them.Oh,there is a way to get Sativex…Get diagnosed with terminal cancer with pain that is known to be helped by Sativex.
I agree with you,but it will not happen,for the same reason they will never publish the ACTUAL number of diagnosed MS cases in the UK. It shows a systemic lack of funding for MS that has been going on for decadesThere are those who will refer me to the latest figures released.Why are they an estimate?
There’s my opinion Ben.Don’t be surprised if a little civil war breaks out,but there again…
OK, so I have to disagree with Steve (woblyboy) here (well, just a bit, anyway). Trials do not prove that something does not work - they can only suggest that under the given trial conditions the medication (or whatever) did not have a beneficial effect. That’s a different way of looking at the result. I can well believe that a flawed trial did not produce a positive outcome. It will certainly not be the first time. In my days in a Government Research Establishment, one of my colleagues ran a trial that produced a result that [Technique X] did not work. I smiled to myself, because I knew that it did work. The real truth is that under my conditions it did work (and it was even seen on TV working) and under her conditions it did not. Was her trial flawed? I really do not know, but I just could not be bothered to get her writeup and see. I did see a number of flawed trials conducted by the same establishment, however.
Of course, one way you might get Sativex, Ben, is for spasicity - Sativex has been licenced for this in cases of MS since mid-2010. Mind you, your PCT (or the thing that replaces them) may not have the money to pay for it - dont ask me why, but your answers can be submitted on the back of a postage stamp.
That sounds like good ense to me, Ben, so let’s get the basics clear:
Which Health Authority, PCT, or whatever?
What condition could Sativex have been prescribed for - spasticity, neuropathic pain, or what?
Is your consultant a Neurologist?
Did he refuse to prescribe? OR Was he willing to - but knew that it would not get past the PCT?
To quote from the Handbook to the NHS Constitution:
“In practice this means that you have a right to receive that drug or treatment if your clinician says it is appropriate for you to receive it and it has been recommended by NICE’s technology appraisals.” (Page 35)
What this means in reality is that if you have a condition for which Sativex is approved for prescription, AND if your Neuro prescribes it, THEN you have a right to get it. Fight for your rights.
I have assumed Sativex, but the synthetic versions (Nabilone/Cesamet, and Dronabinol) come with the same right attached.
Now, you see, the answers to the questions above become really important - if all you want is a bit if MaryJane on the NHS, then you are starting from scratch. It is illegal for any physician to prescribe cannabis. To quote from a Mail Online headline today:
So you want to legalise cannabis? You must be as dumb as Nick Clegg
Just a word of warning first of all. While cannabis is still illegal do be careful posting on a public forum about using it!
As for the ins and outs of prescribing it in the UK I can’t comment as I live in Australia where it isn’t available at all, for spasticity OR pain.
As for legalising cannabis you’ll get the big thumbs down from me. It isn’t a safe drug at all. It can be highly dangerous and having worked for many years in the mental health system I have seen far too many people suffer from permanent drug induced psychosis brought on by smoking dope. And it is impossible to predict who is susceptible to this.
It also causes permanent cognitive damage and measurable deficit to brain neurons etc in chronic smokers.
But this is NOT the same as Sativex and other synthesised forms of cannabis. The medical forms of it don’t have these negative side effects so you are far better off pursuing the Sativex route than smoking skunk in my opinion.
Have you tried all the other forms of pain relief available?
If it works do it. Its not like we have a cure-able illness. It did not help me but i will support anyone who finds their own treatment that helps them. Good luck, hope they do make it legal for people who it helps, cant be any worse than some of the tratments i have been offered.
I know it works for some. I use to pass an old lady with ms, when walking the dog. She would be openly smoking it, in public without a care. But she swore by it. I just quit smoking (normal ciggies) so i dont want to start smoking anything else. But if my ms gets too a stage where i will try anything, i think i will give it a go. Be like being a teenager all over again.
I repeat what I said in my earlier reply about increasing the risks of psychotic illness and funnily enough there is an article on the very issue in today’s paper
Also in Australia at least (I don’t know about the UK) it is an offence to drive while stoned in the same way it is an offence to drive while drunk. And here they DO test for drugs.
And just personally I couldn’t bear getting through the rest of my life feeling “stoned”. Bad enough dealing with fatigue and the foggy effects of some of my meds… oh, for the days of mental clarity… stoned??? Bleugh…
the last part of that article kind of undoes it all “We need to point out that it’s not that you will definitely get a problem if you use drugs, because most people don’t, but the message is that you are increasing your risk.” Their are very serious risks with all drugs (legal or not). I hope never to need to use cannabis, but i will never rule out any treatments that have worked for others. I guess it all stems from their being no cure that we look at other means.
There is no cure for schizophrenia either, darren and having worked in acute mental health settings it is not something I would risk increasing my chances of getting. The thought of having schizophrenia AND MS… OMG
I have to agree with belinda, I have seen the negative effects of this and my OH has had to handle it in his old job as a Paramedic…if you must use it then so be it, but you won’t catch me doing it.
Maybe i could try vapourizing it, if i decide to give it a go. Will have to read up on it. Sativex is a no no where Iam from, will have to speak to neuro me thinks
right ok, ive been smoking it since my teens and have had no side effects from it at all!! who’s talking about spending your whole life stoned?! a few joints before i go to bed with a nice cold beer, yes a beer is a nice chilled way of finishing the day and i sleep like a baby. we have no cure and what winds me up is it’s illegal to do something that makes me feel better!!! so to all you sceptics out there i say YOUR WRONG! i should be allowed to help myself out and to anyone thinking of trying it i say go ahead, try it, if it helps then so be it, if not then stop! my only advice would be not to smoke it with tobacco!!
we only live once and surely ms takes away enough of our lives!!!
I use a vaporizer, not cheap but worth it!! I don’t really wish to get into the habit of taking some each night but when I do it stops the spasms throughout the night.
I have enough of a foggy brain so do not wish to have it every night as I do feel a little foggy the next day. There are clearly some positives for me from taking it…we are all different…everything in moderation.
I am such a lightweight in everything I do these days, one pint and a slight hangover the next day!
If you are going to take it more often then I would have thought that a vaporizer is the way forward. I enjoy the preparation etc and certainly enjoy a good nights sleep once every week or two.
l tried Baclofen and tizanidine for my pain and spasticity. Both meds made me feel terrible. Legs would not function - neither would my brain. lf l had continued with either of them l would be sitting in a wheelchair fulltime with a ‘cabbage’ for a brain. l was so weak l could not hold a book or read. Certainly no way l would attempt to drive a car!!
June 2010 - when Sativex became licensed for ms use - my then - GP prescribed it for me. What a difference it made to my life. l use it mainly late afternoon and before bedtime. lt helps with spasticity - allowing me to move more safely without legs locking and me ending up on the floor. After taking it for 2yrs - the senior partner at the gp practise decided to stop me from having it. My GP was very upset about it and insisted l changed to another practise. l spoke to my district nurse - and she actually took the trouble to go and ask at the other medical centre in the village. The GP there very kindly printed off a Drug Statement - which showed that l had rights - and that l should not have been refused Sativex. ln fact the Drug Statement said that Sativex was beneficial to people with MS - and its withdrawal would cause me suffering as the spasticity would return. Also, the receptionist at the other medical centre rang me to say they would be pleased for me to ‘join’ them - which l did. And at the first appointment the GP put Sativex on my repeat prescription form. Apparently l am not the only pwms who is prescribed it at this practise. This group of GP’s are very much into holistic medicine and one GP offers acupuncture. The last time l saw a Neuro - he too - was keen on Sativex as a med to help with muscle pain and spasticity. Sativex does not give me the weakness and brainfog that Baclofen and Tizanidine did. After a couple of sprays - perhaps 30mins after - l change from not being able to get out of a chair and walk - to being free from the stiffness and feel bright and energised. Able to cope with cooking the dinner - and tackle most chores.
l probably only use 4 sprays a day - which certainly does not make it expensive. Especially as l do not take any other meds or dmd’s which would cost the nhs a fortune. l am forever grateful for my previous GP/DistrictNurse and the new GP for making sure l can continue being prescribed it. l think more and more neuros are actively prescribing Sativex - as it is at least something that does work - and is licensed for ms use - unlike most of the other meds folk are on. And there is no need for regular blood tests for liver function etc.
So l hope that 2013 - things will be easier for us all - and meds like LDN and Sativex - will be available to all who want to try it.
Hi Frances, as usual you put forward a very sensible and positive way of looking at things, the rest of us throw our hands up in the air with horror at! Me included.
The way you cope with SPC, getting out and about with your Tramper and the dogs is remarkable.
You were very lucky indeed to get Sativex prescribed initially and then to go to another GP, with the help of others and still get the sativex.
Sounds like you are very much in charge of your life and are giving us all a good bit of advice too.
I may have over simplified things with that statement, as I do know you struggle too sometimes. Bless you for your kind words and support to me when I needed it.
I use a vaporizer, not cheap but worth it!! I don’t really wish to get into the habit of taking some each night but when I do it stops the spasms throughout the night.
I have enough of a foggy brain so do not wish to have it every night as I do feel a little foggy the next day. There are clearly some positives for me from taking it…we are all different…everything in moderation.
I am such a lightweight in everything I do these days, one pint and a slight hangover the next day!
If you are going to take it more often then I would have thought that a vaporizer is the way forward. I enjoy the preparation etc and certainly enjoy a good nights sleep once every week or two.
Happy New Year all.
[/quote] l consider myself a lightweight [just under the 10st mark] - l rarely drink alcohol - small glass of wine will make me tiddly. A cheap date! is what l have been called in the past. Now l am the designated driver - as l just say no to alcohol when out - l do have a J20 - and ask for one with extra passionfruit in it!! Can’t have enough passion - thats the sort of girl l am.
Someone on this site - who also uses Sativex - does find she gets a litttle ‘high’. Which is unusual as the ‘euphoria’ bit has been removed. Perhaps the effects of Sativex - stopping pain and spasticity improves her ‘mood’. Can’t be bad.
Thanks Poll - for the kind words. l think my absolute subborn streak is what keeps me battling on. lt probably does not help living with me any easier. Apart from on here- l certainly do not discuss any of my health/disabilities with anyone else. l have had ms for 30yrs - so l would have bored all my friends/relatives to distraction by now if l had. And do folk ‘really’ want to know how you are when they ask. l just smile and say ‘l am fine - hows you’.