anyone used SATIVEX?

[whitewolfe]

Hi all,
i was on the old BT and miss it's arachnoiditis area along with it's chronic pain section.

my ? is has anyone been on or tried sativex by lily? it is being used for neuropathy pain in canada and in phase three trials in usa. i believe it's also in trials in the UK. i am curious if the good news on it is really as good as it seems. Anyone on it or heard anything?- thanks:) whitewolfe:)

[dahlek]

nothing yet. You have to understand that folks & Docs in the PN category aren't as cutting edge as other areas. I mean, 90+% of PN treatments are all OFF LABEL. Since the meds ARE approved for other things, legitimacy in treatments or meds is on the far horizon.

Between govt regs and the 'off-label-syndromes' there's too long a way to go. Should I find any good stuff in the research stuff, I'll let you know ASAP! Good thoughts! - j

[LizaJane]

Sativex is another form of cannabis, and it's not the form being used primarily in the US. I'm not sure that it's any better than what's already available, but is a competitor. Seems to me, from what I hear, that the pills are useful for nausea, but that cancer patients prefer smoking the stuff. I don't think it's been found all that useful in chronic pain.

[rose]

This is an excellent research resource. This link will take you to the pain page, and from there you can look for research regarding other issues.

http://www.druglibrary.org/crl/default.htm

rose

[whitewolfe]

thanks to all who said hey and gave your info. I have been tracking this drug for awhile now. i know it is approved and used in Canada but under trials. in the usa it was fast tracked to phase three (last phase) in processing. hopefully it will be here and helpful soon! I am very curious to finf someone who has first hand knowledge if this new drug helps with neuropathic pain. thanks to all -hope everyone is painfree today and more!-G:D

[dahlek]

You're lucky if any doc will take the time to get a good diagnosis, let alone one that's on top of any new, or old treatments in a different package.

Don't know about you or anyone else, but, there are days that either a nerve block or de-nervation procedure sure sounds good. These both have been in and out of favor for decades.

Read Billye's post on Neuro's and Pain - I keep telling [and telling...and telling] myself I HAVE POSITIVE PAIN! But, there's only soo much mind over matter one can do.[?]

Keep telling myself that the fact I can feel has to be GOOD, yet, a 10 minute break now and then wouldn't hurt. I do have to say tho, when I broke one foot and sprained the other this winter, while in the ER room the PN pain did take a far-back back seat! Keeping it all in perspective I guess.

May everyone have an 'ease-up' this week -even a little bit- and good thoughts to all! - j

[Silverlady]

Dalek,
I've had blocks out the kazoo and my opinion is don't waste your money. After the lidocaine wore off from the injections I couldn't tell I'd had them. And it was a looooottttt of money. I haven't had the de-enervation yet. He wanted to do one on my sacroilliac joint, but the sacro. injections seemed to do no good so he wasn't sure the denerv would do any good. There are days tho..just like you...where I'd like every nerve in my body denerved just for the peace that would come from it. The next step the pain clinic wants to do is a spinal cord stimulator. No sir not for me at least until I see what Mayo has to say.
Billye

[whitewolfe]

let me just say for the record that de-nervation isn't all that it is cracked up to be! I have had facet joint injections and SI injections, de-nervation with radio fequencey,Idet, trigger point injections, and chemical injections--- every single one was a waste in effort and money. luckily, mine is w/c and although i have to fight for a single asprin (if you get the picture :rolleyes: ) at least i have not had to pay for failed proceedures. i think that would be heart wrenching...so kudos to you all who have been there [I]and[I]paid for it! although i know i have paid for it in my own way. for instance right now i have a med thatneeds filling and has been there for a week but the w/c will not let it go thru! aggrivation! but my hearing to endit all is coming soon- five years in the making. Can you believe it? 5 YEARS!!!!:mad: :mad: Soon,so soon, it will be over with the fighting. it's planned for friday the 13th of oct which would probably freak most people out, but I am hoping for reverse psychology!

anyway wanted to add i cant believe the pain you must have had [B]J[B] when you broke and sprained your ankles! that would get your mind off stuff for sure.
Silverlady, I turned down the stimulators after finding out they can cause more scar tissue inside the spinal column which is what i suffer from now. so be careful and get a bunch of info if you can. wish i had known then what i do now about pain and spinal fusions. would have never done it like this, that's for sure!
well...here's to hoping the black hole (depression) and the snarling monsters (pain) stay at bay today for everyone!:) --G

[dahlek]

Well, it DID hurt, but, at the same time it reminded me, that what I call: 'Stuff Happens' - well, HAPPENS! It was to say the least, awkward, for a couple of months, till I could get into PT. THAT PT helped more than anyone can measure...I really could do simple exercises well, & they helped! Goodness! Before I went into my 'next' round of surgery stuff, I was walking far better, straighter, steadier w/less penchant for fall than when I was hospitalized w/onset! I lost lots post surgery & a f/u one, but....I know I I[B]/B]can do it, and, IF I can, any wimp can [I'm not a wimp BTW]

Difference is that trauma injury pain -well, usually you can forget the most of it [other than the fact it hurts! NOW!], w/other chronic types such as PN's you always feel as if you've just come out of the Micky-D French-fry VAT! All nerve research rite now is ancillary to AIDS, Spinal Damage or Cardiac research. Can, do our respecitve 'advocacy organizations' really serve us well???, and as w/BT1's breakdown, Do we, should we really have to establish another voice or change those orgs that ostensibly serve us. Yes I'm Getting off the subject....sorry Billye. But it seems that each of us develops new and complicating aspects in addition to or on top of our initial problems...no one in tracking this stuff or plain old doing anything about it! On the other hand, how much do each of us want to be "tracked" w/o our knowledge? Decisions!

Till, then, I will try to keep my cold, calculating, analytical mind in tow and try to pull for positive when and where I can.

G- good luck w/your hearing! - Depression? Oh, Heck Why Not? I mean, we hurt, NOT to be depressed would be abnormal! Looks like UP to me now!

Good thoughts to all!!!!! - j

[Alye]

Hi all, Sativex has been approved by Health Canada for neuropathy associated with MS. Because of this stipulation some insurance companies will cover its off label use for other kinds of neuropathy and some won't. Mine unfortunately will not, inspite of a very detailed letter from my pain specialist who is well known in his field. I have arachnoiditis as well and along with this central pain syndrome and neuropathy.

He did encourage me to buy one pump to see if it was effective 185$, will last about 2 weeks a bit more. I found it helps as I also have severe muscle wasting, nausea and lack of appetite. The effects are more rapid than cessamet and marinol which by the way my insurance company will pay for and are both much more expensive than the sativex, 800$ and 600$ respectively for what I was Rx'd. So to make this long story short, we are fighting it. I am also licenced to grow and possess mj by the Goverment as arach falls into one of the qualifying diseases for medicinal purposes. The problem is the smell makes me sick.

I'm on alot of meds. I'm lucky to have a doctor willing to try anything to try and make me as comfortable as possible although it took me a long time to find this pain centre.

One thing that has helped me alot has been IV lidocaine infusions. This treatment however doesn't help everyone, has to be done in hospital, well monitored ect., lots of doctors don't believe in it.

Hoping this helps, Alye

I have a B12 question, think Rose and Mrs D post here.

[rose]

Best wishes,

rose

[Alye]

I ended up posting on the Vitamin Forum

http://forums.braintalk2.org/showthread.php?t=1311

Kindly, Alye

[whitewolfe]

wow ! hi Alye!
it's great to meet someone finallywho not only shares first hand knowledge of our disease but is also current on the Meds we are looking forward too. I believe if i had the option and thought it would work for the pain I would pay out-of pocket for the med. I am to chicken to try the real stuff, never have and now that i am a mom with an ex husband i am too concerned with the "what if" scenerios. i do believe my ex would NOT understand if he wereto find that out; so i wait for it to be legal with Sativex.
If you don't mind my asking how did you come to have arachnoiditis and where in Canada -general-is your pain clinic? good docs are sooo hard to find. Did it take you a long time to get a diagnoisis? mine came pretty quick although i have been fighting workers comp for about 5 years now. I am really looking forward to it all being over on oct 13! Do you sleep well? just from your response above it seems we have similar issues with health. i'd love to compare notes, so to speak, and see what works for you and what all you have tried. please e-mail me if this forum is to "open" a place to speak. I believe you can find my e-mail under my profile or answer here. It's just wonderful to meet someone with the same issues...as horrible as they might be.
best wishes the pain critters:mad: stay at bay tonight for you and everyone else reading this-G :)

[Gerard]

Hi all,

Sativex - I had Sativex on UK NHS prescription for 6 months & it WORKS brilliantly - no side-effects worth recording - slight lifting of mood but this is good with vicious chronic pain & disability. Tried just about everything cover to cover of BNF (the Doctor's 'Bible' for prescribing drugs), inc Morphine/even Omnopon, neuroeleptics, SSRI, NSAIDS, antiemetics, etc., & Nabilone (barely effective - just helped control nausea & get me thru the day, unlike horrendous side-effects of Domperedone - made me worse, far worse!!! - Sativex is so far the best medicine prescribed. What a pity Southend-on-Sea Primary Care Trust have removed the two GPs (Dr L Singer & Dr R Gardiner), who both prescribed it for me, on the basis that he should not have prescribed, "an unlicensed drug known to have dangerous mental health issues". It's now 21 weeks since I had the last repeat prescription!!! Back in vicious pain, illness, & basically Disabled again!

http://www.thc4ms.org.uk/sativexexperience.php

My two GPs were fired for prescribing Sativex to me and basically keeping me alive - I was in Acidosis when I got it. Two days after I started taking Sativex everyone was saying how much better I looked. 5 weeks later I was in only a fraction of the pain I had been in, I was walking around much easier, regulating body temperature, no nausea or retching, or vomiting, just eating and putting on some weight. I was loosing between 1 to 2Kg per day unless I stuffed my face with 7 to 15,000 calories per day - not easy on UK Incapacity Benefit of £ 78 a week (approx. $125 but with a much higher cost of living than in USA).

So much for our local NHS Primary Care Trust (Southend-on-Sea, Essex). Ian Stidson, Assistant.Director.Primary.Care, was the one who fired my GP and is now refusing all GPs permission to prescribe on any basis.