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	<title>Comments on: Do Arthritis Treatments Like Synflex Work?</title>
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	<description>Bringing information &#38; encouragement to fight RA</description>
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		<title>By: Kelly Young</title>
		<link>http://rawarrior.com/do-arthritis-treatments-like-synflex-work/comment-page-1/#comment-3726</link>
		<dc:creator>Kelly Young</dc:creator>
		<pubDate>Wed, 20 Jan 2010 02:29:38 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=1637#comment-3726</guid>
		<description>:silly: Too funny, Robin.</description>
		<content:encoded><![CDATA[<p><img src='http://rawarrior.com/wp-content/plugins/tango-smileys-extended/tango/silly.png' alt='Silly' title='Silly' class='tse-smiley' /> Too funny, Robin.</p>
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		<title>By: Robin</title>
		<link>http://rawarrior.com/do-arthritis-treatments-like-synflex-work/comment-page-1/#comment-3713</link>
		<dc:creator>Robin</dc:creator>
		<pubDate>Tue, 19 Jan 2010 18:40:00 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=1637#comment-3713</guid>
		<description>Not to say that I don&#039;t believe in supplementation, I take a few &quot;natural&quot; products to help with this and side effects of the meds.  However, given how many times I have heard to eat this or that, take this or that...the mental image that pops up for me (I&#039;m sure those that have noticed me in the last couple of days realize I have an offbeat sense of humor) is that of the painted carriage and wagon with the hula girl out front, promising the elixir that will cure anything from headaches to hangnails.  I realize it is a gaudy image and it makes me smile, but I don&#039;t think that I am that far off the mark with it. :-) 

I would say before anyone takes anything, they should discuss it with their doctor, weigh the cost of the item (for me I&#039;m only willing to spend a certain amount to try something which may or may not work), and best of all talk to real people about it (I talk to everyone and some of the best things I have heard come from the janitor at work, the guy behind the counter at the convenience store, etc.)</description>
		<content:encoded><![CDATA[<p>Not to say that I don&#8217;t believe in supplementation, I take a few &#8220;natural&#8221; products to help with this and side effects of the meds.  However, given how many times I have heard to eat this or that, take this or that&#8230;the mental image that pops up for me (I&#8217;m sure those that have noticed me in the last couple of days realize I have an offbeat sense of humor) is that of the painted carriage and wagon with the hula girl out front, promising the elixir that will cure anything from headaches to hangnails.  I realize it is a gaudy image and it makes me smile, but I don&#8217;t think that I am that far off the mark with it. <img src='http://rawarrior.com/wp-content/plugins/tango-smileys-extended/tango/smile.png' alt='Smile' title='Smile' class='tse-smiley' /> </p>
<p>I would say before anyone takes anything, they should discuss it with their doctor, weigh the cost of the item (for me I&#8217;m only willing to spend a certain amount to try something which may or may not work), and best of all talk to real people about it (I talk to everyone and some of the best things I have heard come from the janitor at work, the guy behind the counter at the convenience store, etc.)</p>
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		<title>By: Dr. Kirsch</title>
		<link>http://rawarrior.com/do-arthritis-treatments-like-synflex-work/comment-page-1/#comment-2364</link>
		<dc:creator>Dr. Kirsch</dc:creator>
		<pubDate>Wed, 09 Dec 2009 06:23:58 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=1637#comment-2364</guid>
		<description>It’s hard work to find out, what is wrong, when studies are tampered. Sometime signs are obvious, as for instance a p-value of 0.10 instead of 0.05, or the use of inappropriate statistical tests. Sometimes there is this small subset, and suddenly all talk is only about these “responders”. Glucosamine is more than 40 years on the market. In some countries it’s sold as nutriceutical and in some countries as a drug. A real proof of benefit is still lacking even after lots of studies. What isn’t lacking is the profit. :-))</description>
		<content:encoded><![CDATA[<p>It’s hard work to find out, what is wrong, when studies are tampered. Sometime signs are obvious, as for instance a p-value of 0.10 instead of 0.05, or the use of inappropriate statistical tests. Sometimes there is this small subset, and suddenly all talk is only about these “responders”. Glucosamine is more than 40 years on the market. In some countries it’s sold as nutriceutical and in some countries as a drug. A real proof of benefit is still lacking even after lots of studies. What isn’t lacking is the profit. <img src='http://rawarrior.com/wp-content/plugins/tango-smileys-extended/tango/smile-big.png' alt='Big Smile' title='Big Smile' class='tse-smiley' /></p>
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		<title>By: Carol</title>
		<link>http://rawarrior.com/do-arthritis-treatments-like-synflex-work/comment-page-1/#comment-2349</link>
		<dc:creator>Carol</dc:creator>
		<pubDate>Tue, 08 Dec 2009 20:51:26 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=1637#comment-2349</guid>
		<description>Help me out here.

I&#039;ve got a question about the statistics used in scientific studies, and how it pertains to us as individuals within a mass of people who presumably fit the usual bell curve.

&quot;A subset of patients (those with more severe pain) received some symptomatic relief from glucosamine in the study&quot;

When it gets to a scientific medical study, there is a presumption that the substance being tested is being tested because someone has a reasonable reason for doing so, like wanting to see if anecdotal claims bear more rigorous scrutiny. They don&#039;t do a study on whether grape Koolaid is a miracle cure for RA unless there has been sufficient anecdotal or lab evidence to show it would be worth putting it to a test.

As individual consumers, we&#039;ve all been in those situations where a drug or substance or practice (and I&#039;ll just say &quot;medicine&quot; to stand for all those things) worked well for us, where it didn&#039;t for most people, or vice versa. That may be regardless of whether the end results showed a bell curve with the mass of people getting the same range of responses, or maybe a 49-51 difference where there is little difference beyond the margin of error (I have no scientific training).

In this case, as long as we can be sure that the demographics were vetted sufficiently closely to make sure that the glucosamine WAS probably the variable that mattered for those with more severe pain, the study seems to thus say that for some people it was valuable.

Without replicating the studies or having access to sufficient data ourselves, how do we make the choices to take results of scientific studies with a pinch of salt or not? And that&#039;s also with understanding that the placebo effect is maybe okay if the results it gets are the ones we need (bodies and minds are such funny things...).

(That&#039;s assuming that we can also filter out the weasel words used by those who are going to make a profit off us at the consumer level).</description>
		<content:encoded><![CDATA[<p>Help me out here.</p>
<p>I&#8217;ve got a question about the statistics used in scientific studies, and how it pertains to us as individuals within a mass of people who presumably fit the usual bell curve.</p>
<p>&#8220;A subset of patients (those with more severe pain) received some symptomatic relief from glucosamine in the study&#8221;</p>
<p>When it gets to a scientific medical study, there is a presumption that the substance being tested is being tested because someone has a reasonable reason for doing so, like wanting to see if anecdotal claims bear more rigorous scrutiny. They don&#8217;t do a study on whether grape Koolaid is a miracle cure for RA unless there has been sufficient anecdotal or lab evidence to show it would be worth putting it to a test.</p>
<p>As individual consumers, we&#8217;ve all been in those situations where a drug or substance or practice (and I&#8217;ll just say &#8220;medicine&#8221; to stand for all those things) worked well for us, where it didn&#8217;t for most people, or vice versa. That may be regardless of whether the end results showed a bell curve with the mass of people getting the same range of responses, or maybe a 49-51 difference where there is little difference beyond the margin of error (I have no scientific training).</p>
<p>In this case, as long as we can be sure that the demographics were vetted sufficiently closely to make sure that the glucosamine WAS probably the variable that mattered for those with more severe pain, the study seems to thus say that for some people it was valuable.</p>
<p>Without replicating the studies or having access to sufficient data ourselves, how do we make the choices to take results of scientific studies with a pinch of salt or not? And that&#8217;s also with understanding that the placebo effect is maybe okay if the results it gets are the ones we need (bodies and minds are such funny things&#8230<img src='http://rawarrior.com/wp-content/plugins/tango-smileys-extended/tango/wink.png' alt='Wink' title='Wink' class='tse-smiley' />.</p>
<p>(That&#8217;s assuming that we can also filter out the weasel words used by those who are going to make a profit off us at the consumer level).</p>
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		<title>By: Kelly Young</title>
		<link>http://rawarrior.com/do-arthritis-treatments-like-synflex-work/comment-page-1/#comment-2025</link>
		<dc:creator>Kelly Young</dc:creator>
		<pubDate>Sun, 29 Nov 2009 13:18:42 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=1637#comment-2025</guid>
		<description>Thanks Hilary.
Do some people think we are so dumb that we haven&#039;t looked into allergies &amp; vitamins. If vitamins could cure or even treat Rheumatoid Arthritis, do they think it could be kept such a big secret? For Pete&#039;s sake! 
You (&amp; I) are not dumb at all, but smart &amp; brave enough to fight RA with the best methods available today.  :yes:</description>
		<content:encoded><![CDATA[<p>Thanks Hilary.<br />
Do some people think we are so dumb that we haven&#8217;t looked into allergies &#038; vitamins. If vitamins could cure or even treat Rheumatoid Arthritis, do they think it could be kept such a big secret? For Pete&#8217;s sake!<br />
You (&#038; I) are not dumb at all, but smart &#038; brave enough to fight RA with the best methods available today.  <img src='http://rawarrior.com/wp-content/plugins/tango-smileys-extended/tango/thumbs-up.png' alt='Yes' title='Yes' class='tse-smiley' /></p>
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		<title>By: Dr. Kirsch</title>
		<link>http://rawarrior.com/do-arthritis-treatments-like-synflex-work/comment-page-1/#comment-1886</link>
		<dc:creator>Dr. Kirsch</dc:creator>
		<pubDate>Mon, 23 Nov 2009 11:59:13 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=1637#comment-1886</guid>
		<description>Thanks, John for the additional data, good to have these studies published. Some studies on chondroitin or glucosamine are regularly presented at the ACR or EULAR congresses. Afterwards the abstracts or studies are quoted, but not the criticism by the audience, when for instance such a study is heavily criticized because of statistical tricks (p value set at 0,10 for instance).
Lothar (Rheumatologe on Twitter)

PS. I didn&#039;t have access for a couple of days.</description>
		<content:encoded><![CDATA[<p>Thanks, John for the additional data, good to have these studies published. Some studies on chondroitin or glucosamine are regularly presented at the ACR or EULAR congresses. Afterwards the abstracts or studies are quoted, but not the criticism by the audience, when for instance such a study is heavily criticized because of statistical tricks (p value set at 0,10 for instance).<br />
Lothar (Rheumatologe on Twitter)</p>
<p>PS. I didn&#8217;t have access for a couple of days.</p>
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		<title>By: Kelly Young</title>
		<link>http://rawarrior.com/do-arthritis-treatments-like-synflex-work/comment-page-1/#comment-1799</link>
		<dc:creator>Kelly Young</dc:creator>
		<pubDate>Thu, 19 Nov 2009 03:45:21 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=1637#comment-1799</guid>
		<description>Viesta, You are so sweet, someone&#039;s going to think you are my mom or one of my kids undercover...  8-) 

Haha. Thanks. This is a touchy topic, but companies like this do not have to prove their statements are true or that their product is effective before selling to us. It&#039;s up to us to figure it out.  :-/</description>
		<content:encoded><![CDATA[<p>Viesta, You are so sweet, someone&#8217;s going to think you are my mom or one of my kids undercover&#8230;  <img src='http://rawarrior.com/wp-content/plugins/tango-smileys-extended/tango/cool.png' alt='Cool' title='Cool' class='tse-smiley' /> </p>
<p>Haha. Thanks. This is a touchy topic, but companies like this do not have to prove their statements are true or that their product is effective before selling to us. It&#8217;s up to us to figure it out.  <img src='http://rawarrior.com/wp-content/plugins/tango-smileys-extended/tango/thinking.png' alt='Thinking' title='Thinking' class='tse-smiley' /></p>
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		<title>By: Viesta</title>
		<link>http://rawarrior.com/do-arthritis-treatments-like-synflex-work/comment-page-1/#comment-1798</link>
		<dc:creator>Viesta</dc:creator>
		<pubDate>Thu, 19 Nov 2009 03:27:30 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=1637#comment-1798</guid>
		<description>Kelly, everytime I log on here, I feel better mentally because I feel more informed with each log on, you have no idea how apprecicated your blog is... thanks</description>
		<content:encoded><![CDATA[<p>Kelly, everytime I log on here, I feel better mentally because I feel more informed with each log on, you have no idea how apprecicated your blog is&#8230; thanks</p>
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		<title>By: Hilary</title>
		<link>http://rawarrior.com/do-arthritis-treatments-like-synflex-work/comment-page-1/#comment-1797</link>
		<dc:creator>Hilary</dc:creator>
		<pubDate>Wed, 18 Nov 2009 23:41:55 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=1637#comment-1797</guid>
		<description>I agree here. I&#039;ve had so many people recommend treatments other than the MTX and various DMARDs, as those made me sick. My cousin is a respected Naturopath/Homeopath, and made a lot of suggestions that made sense--similar to Synflex (only through his own company), and wanted me to go on a cleansing diet and see if the arthritis was food- or allergy-related. None of these actually helped. I have RA and Osteoarthritis, so it&#039;s a tough road, but taking the drugs meant for the diseases are the path for most of us to stop the progression. However, feeling lousy on the drugs is another story altogether... Thanks for posting this Kelly and Dr. Kirsch.</description>
		<content:encoded><![CDATA[<p>I agree here. I&#8217;ve had so many people recommend treatments other than the MTX and various DMARDs, as those made me sick. My cousin is a respected Naturopath/Homeopath, and made a lot of suggestions that made sense&#8211;similar to Synflex (only through his own company), and wanted me to go on a cleansing diet and see if the arthritis was food- or allergy-related. None of these actually helped. I have RA and Osteoarthritis, so it&#8217;s a tough road, but taking the drugs meant for the diseases are the path for most of us to stop the progression. However, feeling lousy on the drugs is another story altogether&#8230; Thanks for posting this Kelly and Dr. Kirsch.</p>
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		<title>By: John</title>
		<link>http://rawarrior.com/do-arthritis-treatments-like-synflex-work/comment-page-1/#comment-1796</link>
		<dc:creator>John</dc:creator>
		<pubDate>Wed, 18 Nov 2009 19:56:24 +0000</pubDate>
		<guid isPermaLink="false">http://rawarrior.com/?p=1637#comment-1796</guid>
		<description>Dr. Kirsch, this was an excellent parsing of the language that is used on nutritional supplements to skirt the FDA&#039;s ban on making claims of safety or efficacy (because if those are made, the FDA can then regulate the product as a drug and require a full clinical analysis). 

The approval for sales of an Over-The-Counter nutritional supplement is often assumed by naive consumers to be an FDA endorsement of efficacy. This is not true. Since Linus Pauling lobbied for Vitamin C in the 1980s, the FDA has no power to assess the efficacy of nutritional products that do not make overt claims of efficacy.

I think that US patients need to understand that nutritional supplements and &quot;nutraceuticals&quot; are not subject to the same regulatory scrutiny as prescription drugs as long as they use these weasel words. 

In addition, I think it might be helpful to note that several large trials have been conducted on glucosamine. One of the most public here in the US was the one conducted by the &lt;a href=&quot;http://nccam.nih.gov/research/results/gait/qa.htm&quot; rel=&quot;nofollow&quot;&gt;National Institute of Health&#039;s Center for Complimentary and Alternative Medicine&lt;/a&gt;. 

This study showed that glucosamine has no benefit on joint destruction:

&lt;i&gt;In the ancillary study, interested GAIT patients were offered the opportunity to continue their original study treatment for an additional 18 months, for a total of 2 years. At the end of the ancillary study, the team had gathered data on 581 knees. After assessing the x-ray data, the researchers concluded that glucosamine and chondroitin sulfate, together or alone, appeared to fare no better than placebo in slowing loss of cartilage in osteoarthritis of the knee.&lt;/i&gt;

A subset of patients (those with more severe pain) received some symptomatic relief from glucosamine in the study, whereas all segments of patients benefited from the active control, Celebrex. Such weak findings of efficacy may be a real effect, or may be a statistical fluke, and the NIH stated that a further, larger study would be required to confirm them.

&lt;a href=&quot;http://linkinghub.elsevier.com/retrieve/pii/S0749806308005896&quot; rel=&quot;nofollow&quot;&gt;This review&lt;/a&gt; looks at the evidence-based literature and highlights the inconsistent performance of glucosamine on pain relief. I think it is clear from the literature that the most one can say about glucosamine is that it may have a minor symptomatic benefit, and in no way preserves cartilage from destruction in OA.</description>
		<content:encoded><![CDATA[<p>Dr. Kirsch, this was an excellent parsing of the language that is used on nutritional supplements to skirt the FDA&#8217;s ban on making claims of safety or efficacy (because if those are made, the FDA can then regulate the product as a drug and require a full clinical analysis). </p>
<p>The approval for sales of an Over-The-Counter nutritional supplement is often assumed by naive consumers to be an FDA endorsement of efficacy. This is not true. Since Linus Pauling lobbied for Vitamin C in the 1980s, the FDA has no power to assess the efficacy of nutritional products that do not make overt claims of efficacy.</p>
<p>I think that US patients need to understand that nutritional supplements and &#8220;nutraceuticals&#8221; are not subject to the same regulatory scrutiny as prescription drugs as long as they use these weasel words. </p>
<p>In addition, I think it might be helpful to note that several large trials have been conducted on glucosamine. One of the most public here in the US was the one conducted by the <a  href="http://nccam.nih.gov/research/results/gait/qa.htm">National Institute of Health&#8217;s Center for Complimentary and Alternative Medicine</a>. </p>
<p>This study showed that glucosamine has no benefit on joint destruction:</p>
<p><i>In the ancillary study, interested GAIT patients were offered the opportunity to continue their original study treatment for an additional 18 months, for a total of 2 years. At the end of the ancillary study, the team had gathered data on 581 knees. After assessing the x-ray data, the researchers concluded that glucosamine and chondroitin sulfate, together or alone, appeared to fare no better than placebo in slowing loss of cartilage in osteoarthritis of the knee.</i></p>
<p>A subset of patients (those with more severe pain) received some symptomatic relief from glucosamine in the study, whereas all segments of patients benefited from the active control, Celebrex. Such weak findings of efficacy may be a real effect, or may be a statistical fluke, and the NIH stated that a further, larger study would be required to confirm them.</p>
<p><a  href="http://linkinghub.elsevier.com/retrieve/pii/S0749806308005896">This review</a> looks at the evidence-based literature and highlights the inconsistent performance of glucosamine on pain relief. I think it is clear from the literature that the most one can say about glucosamine is that it may have a minor symptomatic benefit, and in no way preserves cartilage from destruction in OA.</p>
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