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Medical Marijuana for UC & the CCFA

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Ulcerative Colitis
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beatUC
Veteran Member
Joined : Mar 2010
Posts : 1464
Posted 10/3/2016 5:32 AM (GMT -7)
www.thedailybeast.com/articles/2016/10/02/can-smoking-pot-treat-incurable-disease.html

“CCFA does not endorse the use of marijuana in any form by IBD patients, any current state-based medical marijuana programs, or the legalization of marijuana.”

It would seem that the CCFA is again behind the curve.
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DBwithUC
Veteran Member
Joined : Missing Key Value : en-US, 577 2011
Posts : 4545
Posted 10/3/2016 7:34 AM (GMT -7)
CCFA uses a standard of support in quality human trials. The isolation of the canaboid receptors, understand the mechanism of action, and moving form animal to human trials in multiple diseases takes time.

In a 2009 review, the state of knowledge, and an agenda for research across multiple inflammatory conditions, called for decades of research work. (At least at current funding levels). Getting the Class I status removed would be a HUGE help, and that is what CCFA is supporting.

I looked at 30 studies citing the review paper, and very few were GI track specific, and all seemed to be at fairly basic molecule/tissue focus. It is early days yet.

Cannabinoids as novel anti-inflammatory drugs
Prakash Nagarkatti, Rupal Pandey, Sadiye Amcaoglu Rieder, Venkatesh L Hegde, Mitzi Nagarkatti
Future Med Chem. Author manuscript; available in PMC 2010 Aug 1.
Published in final edited form as: Future Med Chem. 2009 Oct; 1(7): 1333–1349. doi: 10.4155/fmc.09.93

PMCID:
PMC2828614


MM (which is much more than canaboids) is at best a supplement that has some anti-inflammatory properties, and some immuno regulatory action, and some stimulus of appetite and/or other symptom reduction. The CCFA does not endorse non-regulated supplements.

I would not say they were behind the curve, but that they are the curve, and the research is very young.
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beatUC
Veteran Member
Joined : Mar 2010
Posts : 1464
Posted 10/3/2016 1:23 PM (GMT -7)
In my opinion, the CCFA is a parasitic organization thats takes funds from communities to pay for the bloated salaries at the top, while doing nothing for patients. Time and time again, the CCFA sits by neither committing to nor denying the effectiveness of any new treatments. If you've ever been to a CCFA meeting or support group, you'd know exactly what Im talking about. The CEO of CCFA made $551,719 last year not including bonuses. MM is much less harmful than prednisone or any of the UC drugs out there and is listed as a treatment for UC by the federal government. Yes the CCFA has again dropped the ball. Perhaps all the money raised through endless 5K walks and bake sales would be better utilized studying MM and other alternatives to steroids & that fat CEO salary could go a long way in getting us there.
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mindoverbutter
Regular Member
Joined : May 2011
Posts : 236
Posted 10/3/2016 5:08 PM (GMT -7)
Agreed ^
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16180
Posted 10/3/2016 5:41 PM (GMT -7)
I find the ccfa to have a lot of good resources and I believe they do some good.

Ceos of conservation non-profits earn that much or more (Sierra club, and others). Sick, yes but it's universal everywhere regardless of organization.
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IamCurious
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Joined : Jan 2010
Posts : 3550
Posted 10/3/2016 7:23 PM (GMT -7)

beatUC said...
“CCFA does not endorse the use of marijuana in any form by IBD patients, any current state-based medical marijuana programs, or the legalization of marijuana.”
It would seem that the CCFA is again behind the curve.

Maybe you are right. U.S. laws make clinical research difficult or impossible, we have fallen decades behind.

blog.sfgate.com/smellthetruth/2016/03/12/worth-repeating-medical-marijuana-defeats-crohns-disease/
A small human trial in Israel in 2011 found that “Of the 30 patients 21 improved significantly after treatment with cannabis. The average Harvey Bradshaw index improved from 14 to 7. The need for other medication was significantly reduced. Thus, before cannabis use 26 patients used corticosteroids, but only 4 after start of the cannabis therapy.

medicalmarijuanainc.com/inflammatory-bowel-disease/
In one study, cannabis rich in tetrahydrocannabinol (THC) produced significant benefits to 10 or 11 patients with active Crohn’s disease, without side effects, and 5 of those 11 subjects achieved complete remission

medicalmarijuanainc.com/inflammatory-bowel-disease/
Cannabis has been determined to effectively address the symptoms associated with inflammatory bowel disease disease. Two cannabinoids found in cannabis, tetrahydrocannabinol (THC) and cannabidiol (CBD), possess anti-inflammatory effects, offer pain relief, reduce nausea and stimulate appetite...
patients reported an improvement in abdominal pain (83.9%), abdominal cramping (76.8%), joint pain (48.2%), and diarrhea (28.6%)


www.washingtonpost.com/world/middle_east/israeli-medical-marijuana-creates-buzz-but-no-high-will-it-go-global/2015/01/31/558fe072-a19a-11e4-9f89-561284a573f8_story.html?tid=HP_world?tid=HP_world
...pain, skin disorders, seizure disorders, several types of cancers, migraine headaches and post-traumatic stress disorder (PTSD)... even into promising applications for illnesses, such as ALS, that conventional medicine cannot help...

she was skeptical in 2011 when she prescribed cannabis to patients with Crohn’s disease. But “the results were dramatic,” she said. “They didn’t need steroids or surgery or hospitalization.”
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beave
Veteran Member
Joined : Mar 2007
Posts : 2160
Posted 10/4/2016 1:52 AM (GMT -7)

beatUC said...
In my opinion, the CCFA is a parasitic organization thats takes funds from communities to pay for the bloated salaries at the top, while doing nothing for patients. Time and time again, the CCFA sits by neither committing to nor denying the effectiveness of any new treatments. If you've ever been to a CCFA meeting or support group, you'd know exactly what Im talking about. The CEO of CCFA made $551,719 last year not including bonuses. MM is much less harmful than prednisone or any of the UC drugs out there and is listed as a treatment for UC by the federal government. Yes the CCFA has again dropped the ball. Perhaps all the money raised through endless 5K walks and bake sales would be better utilized studying MM and other alternatives to steroids & that fat CEO salary could go a long way in getting us there.

I have some issues with the CCFA as well, but this is completely unfair criticism.

"The CCFA sites by neither committing to nor denying the effectiveness of any new treatments?" It's not their job to run clinical trials on new treatments. They merely report the results of trials run by others and inform patients which medications have been approved as treatments based on said trials.

As for the CEO's pay, I agree it is high, but it's not out of line with other large charities. What's more, the CCFA actually rates quite high for charities, in terms of how little money they spend on overhead, salaries, admin costs, etc. Most of their money is spent on patient education and on research.

As for your claim that MM is "much less harmful than prednisone or any of the UC drugs out there...", that is unsubstantiated because there simply isn't enough research on MM to know what its side effect profile is like. It's quite possible that MM is less harmful than long-term prednisone, but it's less likely that MM is less harmful than aminosalicylates.

Where do you find that the federal government lists MM as a treatment for UC? What federal agency lists it? And what evidence do they site? It's certainly not the FDA.

As for the CCFA using its money to study MM, not likely to happen considering that it would be illegal to do so. The federal government of the U.S. would not allow such a thing to happen.

It's a joke that the federal govt classifies marijuana as a schedule 1 drug and won't allow much research on it, but that's the situation we find ourselves in. It seems unfair to blame the CCFA. Blame congress instead.

Post Edited (beave) : 10/4/2016 2:55:24 AM (GMT-6)

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beave
Veteran Member
Joined : Mar 2007
Posts : 2160
Posted 10/4/2016 1:57 AM (GMT -7)
One additional comment: The CCFA actually is studying MM to the extent that they can. They are running a very large patient survey over time, and they are tracking self-reported MM users and their symptoms and disease progression. It's certainly not a rigorous double-blind, placebo-controlled multi-center trial of MM, but it may produce some useful data.
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beatUC
Veteran Member
Joined : Mar 2010
Posts : 1464
Posted 10/4/2016 6:29 AM (GMT -7)
In NY State, UC is listed as one of the conditions OKed for treatment with MM. These lists of conditions come from the federal government. Anyone who argues that MM is not as safe as prednisone is just plain wrong.
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beave
Veteran Member
Joined : Mar 2007
Posts : 2160
Posted 10/4/2016 1:01 PM (GMT -7)

beatUC said...
In NY State, UC is listed as one of the conditions OKed for treatment with MM. These lists of conditions come from the federal government. Anyone who argues that MM is not as safe as prednisone is just plain wrong.

Please cite a source saying these state lists come from the federal government.

While you're at it, please cite scientific research showing the long-term risks of MM so that we may compare them with those of prednisone.
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IamCurious
Veteran Member
Joined : Jan 2010
Posts : 3550
Posted 10/4/2016 4:54 PM (GMT -7)
MM is a Schedule 1 drug in the U.S. so it may not be fair to ask for long term studies proving its safety. But Israel is the world leader in science on the medical uses of marijuana and they are conducting research proving MM efficacy in UC and Crohn's as well as a host of other diseases included epilepsy and ALS, etc.

So far very few or no side effects found. You cannot say that about Pred.

blog.sfgate.com/smellthetruth/2016/03/12/worth-repeating-medical-marijuana-defeats-crohns-disease/
A small human trial in Israel in 2011 found that “Of the 30 patients 21 improved significantly after treatment with cannabis.

Authors concluded that “this is the first report of cannabis use in CROHN’s disease in humans.

In 2013, researchers reported “complete remission” of Crohn’s Disease Activity in 5 of 11 cannabis test subjects in a prospective 21-person placebo-controlled study. Eight weeks of THC-rich cannabis “produced significant clinical, steroid-free benefits to 10 of 11 patients with active Crohn’s disease, compared with placebo, without side effects.
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beave
Veteran Member
Joined : Mar 2007
Posts : 2160
Posted 10/4/2016 5:40 PM (GMT -7)
^Thanks, IamCurious, for the link & info. Those studies are promising but are quite small.

We need larger studies, but first we need the US govt to allow such studies. As you stated, that won't happen as long as the US stupidly categorizes it as a Schedule 1 drug.

For the record, I am neither pro MM nor anti-MM. I just want real studies and real data so we can know one way or the other. As it is, you have two sides with equally ridiculous stances: one side that claims MM treats just about every known ailment in the world and is harmless or has minimal side effects, and the other side that says that MM is a dangerous drug with no medical benefits. The truth, of course, is somewhere in the middle.
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ambling
Veteran Member
Joined : Missing Key Value : en-US, 577 2011
Posts : 1034
Posted 10/4/2016 5:54 PM (GMT -7)
Yeah, alleged studies from "smell the truth" , sponsored by sublingual CBD spray.....written by a journalist who authored an mm guide book - perhaps there are better sources of information.
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IamCurious
Veteran Member
Joined : Jan 2010
Posts : 3550
Posted 10/4/2016 7:23 PM (GMT -7)
The same information about Israel's marijuana research was also published in The Washington Post.

/www.washingtonpost.com/world/middle_east/israeli-medical-marijuana-creates-buzz-but-no-high-will-it-go-global/2015/01/31/558fe072-a19a-11e4-9f89-561284a573f8_story.html?tid=HP_world
Israeli doctors use it to treat ailments including Crohn’s disease, basal cell carcinoma, psoriasis, Parkinson’s, multiple sclerosis and PTSD in Israeli military veterans, and the pain of cancer patients and the elderly.

One contributor was Timna Naftali, a gastroenterologist at Meir Hospital, who said she was skeptical in 2011 when she prescribed cannabis to 30 patients with Crohn’s disease.
But “the results were dramatic,” she said. “They didn’t need steroids or surgery or hospitalization.”
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ambling
Veteran Member
Joined : Missing Key Value : en-US, 577 2011
Posts : 1034
Posted 10/4/2016 7:29 PM (GMT -7)
An almost magical cure all.... the stuff of newspaper headlines I am afraid.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16180
Posted 10/5/2016 3:47 AM (GMT -7)

beave said...
For the record, I am neither pro MM nor anti-MM. I just want real studies and real data so we can know one way or the other. As it is, you have two sides with equally ridiculous stances: one side that claims MM treats just about every known ailment in the world and is harmless or has minimal side effects, and the other side that says that MM is a dangerous drug with no medical benefits. The truth, of course, is somewhere in the middle.

I agree with this.
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Coffeemate
Regular Member
Joined : Mar 2012
Posts : 236
Posted 10/5/2016 5:01 AM (GMT -7)
So if the choice is between getting relief with a drug with certain known side effects, prednisone, and a drug with so far no side effects at least in the short term, MM, then I think I will choose MM.
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ambling
Veteran Member
Joined : Missing Key Value : en-US, 577 2011
Posts : 1034
Posted 10/5/2016 5:57 AM (GMT -7)
Next time you are in a severe flare, see which one works.
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pb4
Elite Member
Joined : Missing Key Value : en-US, 577 2004
Posts : 20577
Posted 10/5/2016 12:16 PM (GMT -7)
MJ helps me! I was using it a few months before going on Humira, it definitely brought some relief while I was waiting to get on Humira.

Some people react different to it, that doesn't mean it doesn't help others though.....it gives me instant pain relief and a few hours break from the toilet (for my IBS as well)

The medical doesn't work any better than "street" stuff, it's just 3 or 4 times the price for the medical where I live.
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beatUC
Veteran Member
Joined : Mar 2010
Posts : 1464
Posted 10/5/2016 12:49 PM (GMT -7)
MMJ helps me more than any of the traditional UC meds and I've tried them all.
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Uniform Charlie
Veteran Member
Joined : Jul 2015
Posts : 1095
Posted 10/6/2016 9:37 AM (GMT -7)
Can anyone explain what the CCFA actually does? Is it just patient education, or do the fund medical research? I like their recent project, CCFA partners, where they send out questionnaires every few months and gather patient reported outcomes of various lifestyle choices, medical treatments, etc. I'd suggest everyone participate.
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JLG45
Regular Member
Joined : Missing Key Value : en-US, 577 2009
Posts : 114
Posted 10/13/2016 3:38 PM (GMT -7)
CCFA - Canada funds research of number of project in Canada... none of them pertaining to MM but some of the research is interesting.

Other than that I don't think the CCFA offers much assistance to people with the disease. They online info is a little out of date. ie, on their web page, one of their Emerging Treatments, Fecal Transplant. I remember speaking to my GI in 2013 and asked him if research showed promised, he mentioned FT... two years later he said the research went nowhere and didn't recommend it.

FWIW: my GP gave the thumbs up to Cannabis when I was released from the hospital (quote " it's not worse than any of your other medication so you might as well try it"). I was on prednisone, salofalk and other powerful steroids, codeine pain killer. While it didn't stop my UC, For the 1st time in months I slept through the night and my terrible night sweats stopped... I would literally soak the bed ( that's why I was into visit the GP ).

If your in Canada, getting a prescription for MM for the treatment of UC is very straight forward. You need to prove you have the condition.

There is plenty of legitimate research available even though the CCFA fails to recognize ongoing research.

That said, there is only one way to find out if it can provide you with any relief.
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pb4
Elite Member
Joined : Missing Key Value : en-US, 577 2004
Posts : 20577
Posted 10/14/2016 12:40 PM (GMT -7)
They are planning to put all the crohn's and colitis foundations under one, rather than from country to country....this way they can more easily get and keep information all from one global source for IBD I think it's a good thing, then the researchers from around the world of IBD will all be sharing what they discover about IBD and it's support for patients globally as well, basically so the IBD world is on the same page about discoveries with IBD.
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freddyj
Veteran Member
Joined : Aug 2011
Posts : 1293
Posted 10/14/2016 4:11 PM (GMT -7)

beave said...

beatUC said...
In NY State, UC is listed as one of the conditions OKed for treatment with MM. These lists of conditions come from the federal government. Anyone who argues that MM is not as safe as prednisone is just plain wrong.

Please cite a source saying these state lists come from the federal government.

While you're at it, please cite scientific research showing the long-term risks of MM so that we may compare them with those of prednisone.

Anyone who thinks MM is even in the same league as prednisone with respect to dangerous side effects obviously hasnt gotten out much lol
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beave
Veteran Member
Joined : Mar 2007
Posts : 2160
Posted 10/14/2016 4:27 PM (GMT -7)
^I see you missed my point entirely. Congrats?

So, now, tell me, what dose of MM is necessary for it to be "medical," and at that dose, what are the potential side effects? Percentages, if you have them.
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