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Joined: Jan 2008
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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you've got me thinking, should really do some more investigating on the topic....maybe i do have some options right here.....

moving? i'm lucky i have a good job. and as long as i can work, that's no small thing. just did some googling and reading, sounds like NY state is considering.....

this evening, muscle relaxant and heating pad.....a girl's best friends.....

had to laugh at the newly discovered "side effects", would be most interested to learn of other "side effects" as they unfold! that all sounds terrific!



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Nov 2001
Posts: 18,187
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Sue, I wish you could get your hands on some of the salve. It's truly miraculous how quickly it works. And they really should consider making the salve legal, or at least not criminal. It's not like you get high off it, or that you could even eat it. Well, I suppose you could if you were desperate enough to deal with the goopy texture. But still....

See if there's something like the Compassion Centre in your area. There might be. Here the criteria for membership are really strict and your doctor must confirm your diagnosis before you can become one. Thankfully, mine was willing because although AS is on the list of illnesses deemed severe enough for the medicinal list here, I'm on Remicade so I'm not supposed to have pain bad enough to need it, so I can't get on the list. eyes My pain may have reduced a great deal on Remicade, but it's nowhere near gone and doesn't act as a muscle relaxant. Not to mention, its anti-inflammatory properties are such that I don't need to take Celebrex for the most part, just use the salve. If I need to take Celebrex even after my nightly smoke, then it's horribly bad, you know what I mean?

Warm hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

Joined: Jan 2010
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Thanks again for this thread. I walk my dogs in the evening and can see the potential for a good night's sleep, but worry about smoking and cancer too much, so would opt for the vaporized delivery system.

If I choose to use I'll have no problem with using illegally. In fact, I would prefer it that way, although there are legal options here in the US.

I do not support legalization of pot for various reasons, but mainly because it will be another thing for the gov't to regulate and tax. I am very independent and an advocate of privacy rights, so would refuse to show identification and would refuse to allow record of my use to become part of a gov't database. I have had access to just about anything illegal I could ever want without the government's approval and there is definitely no shortage of pot, etc. here in the US.

Disclaimer: This viewpoint is by no means intended to offend anyone here in this international forum, it is merely one person's opinion, definitely not intended to be interpreted as a personal attack!!

The people I've known who have been in trouble with the law due to pot have been the ones playing with less than a full deck to begin with. The"Dude!"types.

I do have friends who have gotten creative with recipes, including salves. It is good to hear that the salve is so effective. It is not something I remembered until reading this thread, so thank you for sharing!

Joined: Jun 2008
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Silver_AS_Kicker
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Silver_AS_Kicker
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Kat, send me the information for which Compassion Club is near you and I'll convince them of how utterly ignorant their faith in the wonders of Remicade are. I got Veteran's Affairs to change their policy regarding Remicade by writing to my MP.

Don't just sit there and take it - educate them.

The problem with the CC is that being a controlled substance, I have to pay for it out of my own pocket. My intention is to apply to Canada Health for the actual legal permission to use it and grow it (but I have no interest in growing it anytime soon).

Chris

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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Hey Chris, it isn't the Compassion Club giving me issues - they've been great. It's Health Canada's issue, according to my info, anyway. Doesn't phase me much. As I see it, I'm getting access to good quality, that hasn't been cut with any kind of unknown substance.

Optimist, if you google, you can get recipes for salves and such. None with the specific ingredients in this one, but they are out there. I hear you on the tax issue. The way I see it, there are so many people out there using it that if they legalized it, they could tax it and use the money in extremely beneficial ways, perhaps including lowering income taxes. We'll have to agree to disagree, I guess. smile

Hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

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Kat, thank you for respectfully considering my opinion. Agreeing to disagree is an expected civility smile

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Silver_AS_Kicker
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Hey Aly! I have heard that pregnancy can help AS pain levels in some women.

Craig

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What do you mean Reefer Madness is over the top?

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Silver_AS_Kicker
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Well Health Canada is a whole other kettle of fish but even Goliath can be beaten. It burns my AS when I hear idiotic policies like "you're on Remicade so therefore you don't qualify as suffering enough for us"?

What?

I sent an email to a recent Nobel Prize winner who did something or other nifty relating to AS - I totally forget who he is now but he was easy to track down. I asked him about the efficacy of biologics wearing off over time and he was so arrogant as to tell me that in his studies, no one ever reported biologics not working. He then suggested I get a new rheumy. This guy is supposed to be an expert...as much of an expert as you could hope to get I suppose and he isn't even aware that many of us have to try several biologics before we find something that works and that many of us report that the drugs lose efficacy after a few months or so.

Quite simply put, they are wrong. If the studies don't match our anecdotal evidence then there is a problem somewhere. Perhaps every one in here who dared to suggest biologics didn't cure them or that the effects just wore off are all liars? Unlikely. Perhaps certain drug combinations make them less effective? Possible but also unlikely. There would have to be a lot of drugs that could do this in order to explain the many people affected in this way. Another possibility is that the "experts" are fallible and missed something in their sample populations, perhaps a bias that was overlooked, maybe they just were unlucky?

I suspect the Nobel Prize winner is more interested in protecting his grant money than answering my questions. I know Remicade can be a wonderful drug for many people but after, I suppose a year and a half, I have seen no significant results. It isn't right to deny someone help because they are already on Remicade.

Chris

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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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thanks kat! sounds like i need to do a bit more research. though your one comment "Here the criteria for membership are really strict and your doctor must confirm your diagnosis before you can become one." is pretty much the same old story....no firm DX, no serious treatment plan.....maybe someday......



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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