Multiple Sclerosis (MS) Support Group

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/ Multiple Sclerosis (MS) Support Group

Sativex

rorafael
rorafael
In August I asked my GP about prescribing Sativex (oral spray based on cannabis extract) for my spasticity - mainly in my right leg & lower back at night - wake up a few times during night and always rigid in morning.

He contacted my neurologist who said that local NHS trust (West Kent PCT) is not prescribing it - although some UK health trusts are using after six year trials completed successfully.

I have just seen my MS nurse today and discussed the spasticity plus Sativex and she confirmed current NHS situation in West Kent - she was also about to see Sativex rep later same day.

For the spasticity she is going to ask my GP to prescribe Baclofen which she suggests taking before bed because of drowsiness side-effect. Hoping it will work or at least lead to what I really feel would be better from all I have read. Seems that if Baclofen doesnt work then it becomes marginally easier for Sativex to be tried.

What are other people's experiences of Sativex ?

[Apologies if starting new thread but 'Search' not working at the moment.]
deleted_user
deleted_user
Never taken it, but I do smoke cannabis and it works WONDERS. I too couldn't sleep cause of pain/spasticity and can't get anything done during the day because of same plus all the other damn symptoms. I suggest getting yourself some weed. And if you don't want to smoke, cook with it! :)
deleted_user
deleted_user
Im with Humunculus... Ive never taken it but I do smoke and eat cannabius edibles and it helps alot although it increases my fatigue levels. Im on Baclofen as well and I only take it if I absolutely have to. The problem with Baclofen is that it can cause seizure if discontiued right away after taking it for awhile. I know being in the U.K its hard to come across weed so easily, but if your able to get it I would give it a try. Good Luck.. ;)
deleted_user
deleted_user
Will u 2 stop calling my Mary Jane weed! Weeds are pruned and pulled out and thrown away. Weeds are garbage. Mary Jane is a valuble herb that has medicinal properties that I know I appreciate. The side effect of euphoria is something I can live with :-) Im in love with Mary Jane but I don't mind sharing her.........
rorafael
rorafael
I took the Baclofen but had terrible side effects ranging from headaches & constantly going to WC through to exhaustion to dizziness. In fact 75% of symptoms mentioned in warnings on packet and the spasticity got worse.

Not sure what to do next as Sativex route blocked.
Anne8
Anne8
I know this is an ancient thread. I hope you have found some relief of some kind. I can tell you that my neuro has prescribed me tizanidine and says that if it doesn't do the trick after 6 months they can put me on Sativex (but I guess the Spanish health system needs to see both baclofen and another are tried first, because Sativex is really expensive for them). I guess the official drug form is without the usual marijuana effects (seeing the world 'differently' etc.) and, well, people wouldn't smell it on you!
rorafael
rorafael
Sorry so long replying to you Anne8 but unable to access DS as computer down then trouble with passwords that I can't remember.

Anyway: Baclofen was terrible as all symptoms got worse and had 80% of side effects. Still unable to get Sativex so prescribed Gabapentin, which has stopped the neuropathic pain but not the spasm.

As far as Sativex is concerned my MS will not supposedly respond to it anymore. UK research on patients with secondary progressive shows minimal if any benefit, unlike with 'milder' forms.
Anne8
Anne8
What about tizanidine? I have been using it for a month and it helps with spaticity and problems sleeping a bit.
rorafael
rorafael
No sure about tizanidine. Will check it out although Gabapentin is working and can increase dosage to ease spasms. More concerned with the excruciating neuropathic pain.
deleted_user
deleted_user
I have that same pain. I found baclofen to be useless and I was a mess on that stuff. Now I take Valium (diazepam) for the spasms which seems to work ok (up to 5 mg. 3X a day).

For pain I have a variety of things I can take for it which includes:
Tylenol #4 (tylenol w/codeine)
MSCONTIN up to two 30 mg. tablets a day (MSCONTIN = morphine sulfate).

I tried the gabapentin (neurtontin) and had an allergic reaction to it.

Same story with Lyrica.

Plus both of the above can cause weight gain, something I do not need. I wish they worked however as this awful neuropathy is incapacitating!

I think that cannabis helps with this illness, mostly with state of mind and perception of symptoms; some help with pain too. Definitely great for depression! It is said to halt/slow the progression of MS. However, there is not a lot of research re: this possibility. I think eating cannabis can be very helpful, esp. if you have trouble sleeping and are in a lot of pain.

I hope you can find something to help w/the pain. Admittedly, the morphine sulfate (MSCONTIN) is the most effective of the lot.
CNOELLERT
CNOELLERT
I have taken Baclofen for spasisity for 3.5 yrs
I take 4 20mgs tablets
Morning,noon,late afternoon, evening
I keep changing the time of the last 2 doses because I seem to have more spasisity at night when I'm winding down my physical activities for the day
My left thigh is where it mostly occurs

Also for the last year I'm taking Flexeral before bed so I don't have continued muscle spasms in my calf and feet