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Re: Chronic PKD pain
|
Diane
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Nov 04, 2009 16:26 PST
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What a great nephrologist!
I am beaming.
Love
Diane
On Nov 4, 2009, at 1:40 AM, jcro-@aol.com wrote:
| | Absolutely Diane. This is what this group is all about. I hope it
helps those who need this information. As I continue to read "The
China Project" I can't help but to wonder Why this information is
not all over the news as if it was a plague? My Nephrologist told
me 14 years ago that my diet would dictate if I ever had to go on
dialysis. I didn't listen, I was too young or stupid to understand.
Yesterday, I had my appointment with my Nephrologist. Everything is
perfect. She said I was her easiest patient to treat. She did,
however, asked once again about my diet habits. She strongly
believe that the key is in not consuming animal products. Although,
she allows some seafood.
Rgds,
JC
In a message dated 11/3/2009 7:38:37 P.M. Eastern Standard Time, Dia-@pkdiet.com
writes:
Dear JC, Craig, Vicki, and Tzee, and All,
JC these emails from you, Craig, Tzee, and Vicki have made my day. I
have forwarded some of them onto the researchers to encourage them
to continue their PKD research. Great going all of you. I would like
to add this tidbit onto your story, if you will allow?
How about it JC, Vicki, and Craig? and any others? I think these are
each inspiring and helpful to all of us with cystic organs.
I have yet to read the book, the China Project. I am looking forward
to eventually reading it.
with love and support,
Diane
| | Dear Diane,
At the beginning of my journey with PKD some 14 years ago, I had a
lot of cyst ruptures, excruciating pain that would leave me
bedridden for days. I was 28 years old. Then, I started reading
and searching until I learned about you, the diets and how to
change my diet to improve things. Although, I am not 100%
vegetarian, I did changed many items of my diet and added some
others. I can honestly say that I have not had any pain episodes
in years. I can't tell you when was the last time because I truly
do not remember.
Both my natives are larger than they were then but I do not have
not had any more ruptures or pain. I think for me the secret has
been: no red meats, no artificial foods. I also drink nothing but
natural juices and water. I do not drink sodas, whole milk or
alcohol and I drink a tall glass of cranberry juice every single
morning and some afternoons for the last 14 years.
BTW...I am reading The China Project. What an amazing and
interesting book. You are living proof that what they found does
work. I can wait to finish reading it.
Rgds,
JC
In a message dated 10/29/2009 7:40:33 P.M. Eastern Standard Time, Dia-@pkdiet.com
writes:
I understand what you are saying JC. Many many years ago, in my
hippy days, I traveled extensively throughout Asia, it was so sad
to meet up with fellow travelers later after they had become
addicted to opium or heroin. They were like walking skeletons.
Opiates happen to be something I cannot take. I just throw up and
cannot keep it down. Following my liver resection surgery the docs
got very creative on what to give me to relieve pain.
There are several with PKD who have written to me that the only way
they can function is by taking opiates to control the daily chronic
pain from PKD.
By removing a cystic PKD kidney this has been shown to lessen
painful episodes. A very observant surgeon developed a denervation
procedure of PKD kidneys as another treatment to lessen severe PKD
pain.
There is a PKD pain study underway at the Mayo Clinic with Dr.
Marie Hogan that utilizes an interventional procedure known as -
Videothracoscopic Splanchnicectomy (VSPL) similar to
Videothoracoscopic splanchnicectomy done for pancreatitis pain. For
more information on this clinical trial :
http://www.pkdiet.com/pages/pain/painchronic.htm
I too did not realize how difficult and how severe PKD pain can
become with some individuals until I went to PKD conference and met
with a few individuals using fentanyl patches and more to function.
"FDA announced on February 12, 2008, that PriCara, Division of
Ortho-McNeil-Janssen Pharmaceuticals, Inc.has recalled all lots of
25 mcg DURAGESIC® (fentanyl transdermal system) patches sold by
PriCara in the United States and all 25 mcg/hr fentanyl patches
sold by Sandoz Inc.(See:Sandoz Fentanyl Patch Recall) in the United
States are being voluntarily recalled."
At this same PKD conference there was a PKD pain lecture given by
both Dr. Torres [giving the medical aspects of PKD pain relief] and
the laparoscopic surgeon who developed the denervation procedure. I
always learn so much from these conferences, though I have not gone
to one since Dr. Torres stopped going.
Warmly,
Diane
<Diane1.jpg>
On Oct 29, 2009, at 12:23 PM, jcro-@aol.com wrote:
| | I refused to take Opiates at all cost. Part of my work is working
with drug addicted patients and I have seen what Opiates do to a
persons life. It literally destroys them physically, financially,
mentally and emotionally to the point that they can not function.
It is very sad. Do not take them if you can help it. They are
extremely addictive.
Rgds,
JC
In a message dated 10/29/2009 2:40:55 P.M. Eastern Daylight Time, Dia-@pkdiet.com
writes:
Some members have chronic pain from PLD and take opiods which can
lead to constipation. Here is a new drug to ask your docs about if
this applys to you.
ACG: Compound Eases Constipation for Opioid Patients
By Kristina Fiore, Staff Writer, MedPage Today
Published: October 28, 2009
Reviewed by Zalman S. Agus, MD; Emeritus Professor
University of Pennsylvania School of Medicine and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner
<16658.jpg>
SAN DIEGO -- An investigational drug increased spontaneous bowel
movements for patients with opioid-induced constipation,
researchers said here.
Bowel movements per week increased from about one at baseline to
five or six, depending on the dose used, Lynn Webster, MD, of
Lifetree Clinical Research in Salt Lake City, and colleagues
reported at the American College of Gastroenterology meeting here.
The drug, NKTR-118, "increased the frequency of bowel movements
without a reversal of analgesia, and it was reasonably safe with
no serious problems in this study," Webster said.
He said constipation is a common side effect of opioid therapy,
affecting about 40% to 60% of patients on chronic or acute
treatments.
The investigational compound is a polymer form of naloxone that
antag onizes peripheral opioid receptors in the gut. It can act
selectively, preventing it from reversing opioid pain management,
the researchers said.
For their Phase-II, randomized, double-blind, placebo-controlled
trial, the researchers recruited patients on stable regimens of
opioids who consistently had fewer than three spontaneous bowel
movements per week.
A total of 208 patients were randomized to either a 5-mg, 25-mg,
or 50-mg dose of NKTR-118 or placebo for four weeks.
The researchers found that spontaneous bowel movements increased
significantly for patients on the 25-mg and 50-mg dose compared
with placebo.
Patients on the 25-mg dose increased to five spontaneous bowel
movements per week, up from 1.4 per week at
baseline, whereas placebo patients increased to just 3.1 per week
from 1.2 at baseline.
Those on the 50-mg dose had six spontaneous bowel movements per
week, up from 1.6 at baseline -- a
significant improvement compared with those on placebo, who
increased to 3.3 per week from 1.4 at baseline.
Spontaneous bowel movements for patients on the 5-mg dose did not
differ significantly from those on placebo, the researchers said.
The median time to first bowel movement was 6.6 hours for those in
the 25-mg dose, compared with 48.6 hours for those on placebo
(P=0.001). It was 2.9 hours for those on
the 50-mg dose, compared with 44.9 hours
with placebo (P=0.002).
Webster said that there was no change in patient pain, and there
were no changes in the amount of opioid used for any patient.
However, dropout rates were significantly higher for the 50-mg
dose of the drug compared with placebo, "probably due to the side
effect profile," Webster said.
The most sign ificant side effects associated with the drug were
gastrointestinal in nature, and included nausea and abdominal pain.
Side effects were not significantly different for the 5-mg dose
compared with placebo, and there was more nausea in the placebo
group for the 25-mg dose, but side effects were significantly
higher in the 50-mg dose compared with placebo.
There was also one serious adverse event in the 50-mg dose, with a
patient admitted to the hospital for excessive abdominal cramping.
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<html><head></head><body style="word-wrap: break-word; -webkit-nbsp-mode: space; -webkit-line-break: after-white-space; ">What a great nephrologist!<div><br></div><div>I am beaming.</div><div><br></div><div>Love</div><div>Diane<br><div><div>On Nov 4, 2009, at 1:40 AM, <a href="mailto:jcro-@aol.com">jcro-@aol.com</a> wrote:</div><br class="Apple-interchange-newline"><blockquote type="cite">
<div style="FONT-FAMILY: Arial; COLOR: #000000; FONT-SIZE: 10pt" id="role_body" bottommargin="7" leftmargin="7" rightmargin="7" topmargin="7"><font id="role_document" color="#000000" size="2" face="Arial">
<div>
<div>Absolutely Diane. This is what this group is all about. I hope
it helps those who need this information. As I continue to read "The China
Project" I can't help but to wonder Why this information is not all over the
news as if it was a plague? My Nephrologist told me 14 years ago that
my diet would dictate if I ever had to go on dialysis. I didn't listen, I
was too young or stupid to understand.</div>
<div> </div>
<div>Yesterday, I had my appointment with my Nephrologist. Everything is
perfect. She said I was her easiest patient to treat. She did,
however, asked once again about my diet habits. She strongly believe that
the key is in not consuming animal products. Although, she allows some
seafood.</div>
<div> </div>
<div>Rgds,</div>
<div> </div>
<div>JC</div>
<div> </div>
<div> </div>
<div> </div>
<div>In a message dated 11/3/2009 7:38:37 P.M. Eastern Standard Time,
<a href="mailto:Dia-@pkdiet.com">Dia-@pkdiet.com</a> writes:</div>
<blockquote style="BORDER-LEFT: blue 2px solid; PADDING-LEFT: 5px; MARGIN-LEFT: 5px"><font style="BACKGROUND-COLOR: transparent" color="#000000" size="2" face="Arial">Dear JC,
Craig, Vicki, and Tzee, and All,
<div><br>
<div>JC these emails from you, Craig, Tzee, and Vicki have made my day. I have
forwarded some of them onto the researchers to encourage them to continue
their PKD research. Great going all of you. I would like to add this tidbit
onto your story, if you will allow?</div>
<div><br></div>
<div>How about it JC, Vicki, and Craig? and any others? I think these are each
inspiring and helpful to all of us with cystic organs.</div>
<div><br></div>
<div>I have yet to read the book, the China Project. I am looking forward to
eventually reading it.</div>
<div><br></div>
<div>with love and support, </div>
<div><br></div>
<div>Diane<br>
<div><br class="Apple-interchange-newline">
<blockquote type="cite">
<div style="FONT-FAMILY: Arial; COLOR: #000000; FONT-SIZE: 10pt" bottommargin="7" leftmargin="7" rightmargin="7" topmargin="7"><font color="#000000" size="2" face="Arial">
<div>
<div>Dear Diane,</div>
<div> </div>
<div>At the beginning of my journey with PKD some 14 years ago, I had a lot
of cyst ruptures, excruciating pain that would leave me bedridden for
days. I was 28 years old. Then, I started reading and searching
until I learned about you, the diets and how to change my diet to improve
things. Although, I am not 100% vegetarian, I did changed many items
of my diet and added some others. I can honestly say that I have not
had any pain episodes in years. I can't tell you when was the last
time because I truly do not remember.</div>
<div> </div>
<div>Both my natives are larger than they were then but I do not have not
had any more ruptures or pain. I think for me the secret has been: no
red meats, no artificial foods. I also drink nothing but natural
juices and water. I do not drink sodas, whole milk or alcohol and
I drink a tall glass of cranberry juice every single morning and some
afternoons for the last 14 years.</div>
<div> </div>
<div>BTW...I am reading The China Project. What an amazing and
interesting book. You are living proof that what they found does
work. I can wait to finish reading it.</div>
<div> </div>
<div>Rgds,</div>
<div> </div>
<div>JC</div>
<div> </div>
<div> </div>
<div> </div>
<div>In a message dated 10/29/2009 7:40:33 P.M. Eastern Standard Time, <a title="mailto:Dia-@pkdiet.com" href="mailto:Dia-@pkdiet.com">Dia-@pkdiet.com</a> writes:</div>
<blockquote style="BORDER-LEFT: blue 2px solid; PADDING-LEFT: 5px; MARGIN-LEFT: 5px"><font style="BACKGROUND-COLOR: transparent" color="#000000" size="2" face="Arial"><br>I understand what you are saying JC. Many many years ago,
in my hippy days, I traveled extensively throughout Asia, it was so sad to
meet up with fellow travelers later after they had become addicted to
opium or heroin. They were like walking skeletons.
<div><br></div>
<div>Opiates happen to be something I cannot take. I just throw up and
cannot keep it down. Following my liver resection surgery the docs got
very creative on what to give me to relieve pain. </div>
<div><br></div>
<div>There are several with PKD who have written to me that the only way
they can function is by taking opiates to control the daily chronic pain
from PKD. </div>
<div><br></div>
<div>By removing a cystic PKD kidney this has been shown to lessen painful
episodes. A very observant surgeon developed a denervation procedure of
PKD kidneys as another treatment to lessen severe PKD pain.</div>
<div><br></div>
<div>There is a PKD pain study underway at the Mayo Clinic with Dr. Marie
Hogan that utilizes an interventional procedure known as -
Videothracoscopic Splanchnicectomy (VSPL) similar
to Videothoracoscopic splanchnicectomy done for pancreatitis
pain. For more information on this clinical trial :</div>
<div><br></div>
<div><a title="http://www.pkdiet.com/pages/pain/painchronic.htm" href="http://www.pkdiet.com/pages/pain/painchronic.htm">http://www.pkdiet.com/pages/pain/painchronic.htm</a></div>
<div><br></div>
<div>I too did not realize how difficult and how severe PKD pain can
become with some individuals until I went to PKD conference and met with a
few individuals using fentanyl patches and more to function. </div>
<div><br></div>
<div><font class="Apple-style-span" size="3"><span style="FONT-SIZE: 12px" class="Apple-style-span"><i>"FDA announced on February 12, 2008, that
PriCara, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc.has
recalled all lots of 25 mcg DURAGESIC® (fentanyl transdermal system)
patches sold by PriCara in the United States and all 25 mcg/hr
fentanyl patches sold by Sandoz Inc.(See:Sandoz Fentanyl
Patch Recall) in the United States are being voluntarily
recalled."</i></span></font></div>
<div><br></div>
<div><br></div>
<div>At this same PKD conference there was a PKD pain lecture given by
both Dr. Torres [giving the medical aspects of PKD pain relief] and the
laparoscopic surgeon who developed the denervation procedure. I always
learn so much from these conferences, though I have not gone to one since
Dr. Torres stopped going.</div>
<div><br></div>
<div>Warmly,</div>
<div>Diane</div>
<div><span><Diane1.jpg></span><br> <br>
<div>
<div>On Oct 29, 2009, at 12:23 PM, <a title="mailto:jcro-@aol.com" href="mailto:jcro-@aol.com">jcro-@aol.com</a> wrote:</div><br class="Apple-interchange-newline">
<blockquote type="cite">
<div style="FONT-FAMILY: Arial; COLOR: #000000; FONT-SIZE: 10pt" bottommargin="7" leftmargin="7" rightmargin="7" topmargin="7"><font color="#000000" size="2" face="Arial">
<div>
<div>I refused to take Opiates at all cost. Part of my work is
working with drug addicted patients and I have seen what Opiates do to a
persons life. It literally destroys them physically, financially,
mentally and emotionally to the point that they can not function.
It is very sad. Do not take them if you can help it. They
are extremely addictive.</div>
<div> </div>
<div>Rgds,</div>
<div> </div>
<div>JC</div>
<div> </div>
<div> </div>
<div> </div>
<div> </div>
<div>In a message dated 10/29/2009 2:40:55 P.M. Eastern Daylight Time,
<a title="mailto:Dia-@pkdiet.com" href="mailto:Dia-@pkdiet.com">Dia-@pkdiet.com</a> writes:</div>
<blockquote style="BORDER-LEFT: blue 2px solid; PADDING-LEFT: 5px; MARGIN-LEFT: 5px"><font style="BACKGROUND-COLOR: transparent" color="#000000" size="2" face="Arial">Some members have chronic pain from PLD and take opiods
which can lead to constipation. Here is a new drug to ask your docs
about if this applys to you.
<div><br></div>
<div><span style="FONT-FAMILY: Arial, Helvetica, sans-serif; FONT-SIZE: 11px" class="Apple-style-span">
<table style="Z-INDEX: auto; POSITION: static" border="0" cellspacing="0" cellpadding="0" width="500" align="center">
<tbody>
<tr>
<td style="FONT-FAMILY: georgia; COLOR: rgb(0,51,153); FONT-SIZE: 17px; FONT-WEIGHT: bold" height="40" valign="top">
<h1 style="FONT-FAMILY: georgia; COLOR: rgb(0,51,153); FONT-SIZE: 19px; FONT-WEIGHT: bold">ACG:
Compound Eases Constipation for Opioid Patients</h1></td></tr>
<tr>
<td style="BORDER-BOTTOM: rgb(204,204,204) 1px solid; FONT-SIZE: 11px; BORDER-TOP: rgb(204,204,204) 1px solid" height="40">
<div style="DISPLAY: block" id="pageContent">
<table style="Z-INDEX: auto; POSITION: static" border="0">
<tbody>
<tr>
<td style="FONT-SIZE: 11px">
<table style="Z-INDEX: auto; POSITION: static" border="0">
<tbody>
<tr>
<td style="PADDING-BOTTOM: 5px; PADDING-LEFT: 0px; PADDING-RIGHT: 0px; FONT-SIZE: 11px; PADDING-TOP: 5px"><span style="FONT-FAMILY: arial; COLOR: rgb(0,0,0); FONT-SIZE: 11px">By Kristina
Fiore, Staff Writer, MedPage Today<br><span style="COLOR: rgb(102,102,102)">Published: October
28, 2009</span><br>Reviewed by <a style="COLOR: rgb(0,0,153); FONT-SIZE: 12px; TEXT-DECORATION: none" class="tbhdln" title="http://www.medpagetoday.com/reviewer.cfm?reviewerid=30" href="http://www.medpagetoday.com/reviewer.cfm?reviewerid=30">Zalman
S. Agus, MD</a>; Emeritus
Professor <br>University of Pennsylvania School
of Medicine and<br>Dorothy Caputo, MA, RN, BC-ADM,
CDE, Nurse Planner</span></td>
<td style="FONT-SIZE: 11px; PADDING-TOP: 5px" align="right"><a style="COLOR: rgb(0,0,153); FONT-SIZE: 12px; TEXT-DECORATION: none" title="http://www.medpagetoday.com/posttest.cfm?testpage=16658&;TBID=16658&topicid=315" href="http://www.medpagetoday.com/posttest.cfm?testpage=16658&TBID=16658&topicid=315"></a><br></td></tr></tbody></table></td></tr>
<tr>
<td style="FONT-SIZE: 11px; PADDING-TOP: 10px"><span style="LINE-HEIGHT: 15px; FONT-FAMILY: arial; FONT-SIZE: 12px">
<table border="0" width="120" align="right">
<tbody>
<tr>
<td style="FONT-SIZE: 11px" valign="top" align="right"><span><16658.jpg></span></td></tr></tbody></table>
<div style="FONT: 12px Arial; COLOR: rgb(21,21,21)">SAN
DIEGO -- An investigational drug increased spontaneous
bowel movements for patients with opioid-induced
constipation, researchers said here.<br><br>Bowel
movements per week increased from about one at baseline to
five or six, depending on the dose used, Lynn Webster, MD,
of Lifetree Clinical Research in Salt Lake City, and
colleagues reported at the American College of
Gastroenterology meeting here.<br><br>The drug, NKTR-118,
"increased the frequency of bowel movements without a
reversal of analgesia, and it was reasonably safe with no
serious problems in this study," Webster said.
<div style="LINE-HEIGHT: 15px"><br class="webkit-block-placeholder"></div>He said constipation
is a common side effect of opioid therapy, affecting about
40% to 60% of patients on chronic or acute treatments.
<div style="LINE-HEIGHT: 15px"><br class="webkit-block-placeholder"></div><p style="LINE-HEIGHT: 15px">The investigational compound
is a polymer form of naloxone that antag onizes peripheral
opioid receptors in the gut. It can act selectively,
preventing it from reversing opioid pain management, the
researchers said.</p><p style="LINE-HEIGHT: 15px">For their Phase-II,
randomized, double-blind, placebo-controlled trial, the
researchers recruited patients on stable regimens of
opioids who consistently had fewer than three spontaneous
bowel movements per week.</p><p style="LINE-HEIGHT: 15px">A total of 208 patients were
randomized to either a 5-mg, 25-mg, or 50-mg dose of
NKTR-118 or placebo for four weeks.</p><p style="LINE-HEIGHT: 15px">The researchers found that
spontaneous bowel movements increased significantly for
patients on the 25-mg and 50-mg dose compared with
placebo.</p><p style="LINE-HEIGHT: 15px">Patients on the 25-mg dose
increased to five spontaneous bowel movements per week, up
from 1.4 per week at baseline, whereas placebo patients
increased to just 3.1 per week from 1.2 at baseline.</p><p style="LINE-HEIGHT: 15px">Those on the 50-mg dose had
six spontaneous bowel movements per week, up from 1.6 at
baseline -- a significant improvement compared with those
on placebo, who increased to 3.3 per week from 1.4 at
baseline.</p><p style="LINE-HEIGHT: 15px">Spontaneous bowel movements
for patients on the 5-mg dose did not differ significantly
from those on placebo, the researchers said.</p><p style="LINE-HEIGHT: 15px">The median time to first
bowel movement was 6.6 hours for those in the 25-mg dose,
compared with 48.6 hours for those on placebo
(<em>P</em>=0.001). It was 2.9 hours for those on the
50-mg dose, compared with 44.9 hours with placebo
(<em>P</em>=0.002).</p><p style="LINE-HEIGHT: 15px">Webster said that there was
no change in patient pain, and there were no changes in
the amount of opioid used for any patient.</p><p style="LINE-HEIGHT: 15px">However, dropout rates were
significantly higher for the 50-mg dose of the drug
compared with placebo, "probably due to the side effect
profile," Webster said.</p><p style="LINE-HEIGHT: 15px">The most sign ificant side
effects associated with the drug were gastrointestinal in
nature, and included nausea and abdominal pain.</p><p style="LINE-HEIGHT: 15px">Side effects were not
significantly different for the 5-mg dose compared with
placebo, and there was more nausea in the placebo group
for the 25-mg dose, but side effects were significantly
higher in the 50-mg dose compared with placebo.</p><p style="LINE-HEIGHT: 15px">There was also one serious
adverse event in the 50-mg dose, with a patient admitted
to the hospital for excessive abdominal
cramping.</p></div></span></td></tr></tbody></table></div></td></tr></tbody></table></span></div>
<div><br></div></font></blockquote></div>
<div></div>
<div> </div></font></div></blockquote></div><br></div></font></blockquote></div>
<div></div>
<div> </div></font></div></blockquote></div><br></div></div></font></blockquote></div>
<div></div>
<div> </div></font>
</div>
</blockquote></div><br></div></body></html>
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