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PKD and exercise  Anamarija Richter
 Nov 05, 2009 00:42 PST 

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Dear All,

I was diagnosed with PKD when I was 29 (I am now 36), after about two years
of inexplicable pain episodes in my stomach and flanks. For a while I had
problems that were ascribed to bacteria in the cysts, which caused frequent
urinary tract infections, and which discontinued after some specially
targeted medication.
Two a half years ago, my mother started dyalisis due to PKD and I decided to
do more regular checks myself, as I was not really taking this condition
seriously at all, and thought it was something that was not so problematic.
When I saw a nephrologist, he said that I already have a large number of
cysts and seemingly my kidneys are slightly enlarged. All my bloodwork is
still normal, and I had asked him about the possibilities of slowing down
the process of cyst enlargement. He advised me not to eat too much meat,
which is consistent with what I read in your e-mails, and at various
websites, but he also advised me to avoid strenuous exercise, as it is
allegedly not good for the kidneys, as they only work properly when we lie
down and rest.

I have not been able to find this information anywhere on the Internet.
Though I am aware that Internet may not always be the most reliable source,
I have not even seen it mentioned anywhere. For some time, I did not do
running, but just walking and light bicycle riding, but slightly more
vigorous exercise is rather important to me in order to keep my weight under
control since I quite smoking. By that I do not mean marathon running at
all, but rather jogging on the treadmill with the occasional minute of fast
pace for 30 minutes several times a week. He explained that due to my
condition I am always slightly dehydrated, due to polyuria (another issue
that I was not able to find as the most prominent PKD symptom), caused by
the body not being able to properly "clean" and therefore excreting more
liquid. That is why there is a risk of dehydrating while doing exercise, due
to too much sweat. He advised to take at least 1 L of water while
exercising, and I have noticed that I am indeed finding the exercise easier
if I drink something like 1.5 L during the exercise - this is on top of the
daily intake of water.

Would anybody have more information on this?

Thank you,

Anamarija



On Thu, Oct 29, 2009 at 7:39 PM, Diane <Dia-@pkdiet.com> wrote:

 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<http://www.medpagetoday.com/reviewer.cfm?reviewerid=30>;
Emeritus Professor
University of Pennsylvania School of Medicine and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner
<http://www.medpagetoday.com/posttest.cfm?testpage=16658&TBID=16658&topicid=315>
    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 antagonizes
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 significant 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.

--0016e65aed2af4cd7b04779bb21b
Content-Type: text/html; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit

<div>Dear All,</div>
<div> </div>
<div>I was diagnosed with PKD when I was 29 (I am now 36), after about two years of inexplicable pain episodes in my stomach and flanks. For a while I had problems that were ascribed to bacteria in the cysts, which caused frequent urinary tract infections, and which discontinued after some specially targeted medication. </div>

<div>Two a half years ago, my mother started dyalisis due to PKD and I decided to do more regular checks myself, as I was not really taking this condition seriously at all, and thought it was something that was not so problematic. When I saw a nephrologist, he said that I already have a large number of cysts and seemingly my kidneys are slightly enlarged. All my bloodwork is still normal, and I had asked him about the possibilities of slowing down the process of cyst enlargement. He advised me not to eat too much meat, which is consistent with what I read in your e-mails, and at various websites, but he also advised me to avoid strenuous exercise, as it is allegedly not good for the kidneys, as they only work properly when we lie down and rest.</div>

<div> </div>
<div>I have not been able to find this information anywhere on the Internet. Though I am aware that Internet may not always be the most reliable source, I have not even seen it mentioned anywhere. For some time, I did not do running, but just walking and light bicycle riding, but slightly more vigorous exercise is rather important to me in order to keep my weight under control since I quite smoking. By that I do not mean marathon running at all, but rather jogging on the treadmill with the occasional minute of fast pace for 30 minutes several times a week. He explained that due to my condition I am always slightly dehydrated, due to polyuria (another issue that I was not able to find as the most prominent PKD symptom), caused by the body not being able to properly "clean" and therefore excreting more liquid. That is why there is a risk of dehydrating while doing exercise, due to too much sweat. He advised to take at least 1 L of water while exercising, and I have noticed that I am indeed finding the exercise easier if I drink something like 1.5 L during the exercise - this is on top of the daily intake of water.</div>

<div> </div>
<div>Would anybody have more information on this?</div>
<div> </div>
<div>Thank you,</div>
<div> </div>
<div>Anamarija</div>
<div> </div>
<div><br> </div>
<div class="gmail_quote">On Thu, Oct 29, 2009 at 7:39 PM, Diane <span dir="ltr"><<a href="mailto:Dia-@pkdiet.com" target="_blank">Dia-@pkdiet.com</a>></span> wrote:<br>
<blockquote style="BORDER-LEFT: #ccc 1px solid; MARGIN: 0px 0px 0px 0.8ex; PADDING-LEFT: 1ex" class="gmail_quote">
<div style="WORD-WRAP: break-word">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">
<table 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">
<table border="0" width="100%">
<tbody>
<tr>
<td style="FONT-SIZE: 11px">
<table border="0" width="100%">
<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" href="http://www.medpagetoday.com/reviewer.cfm?reviewerid=30" target="_blank">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" href="http://www.medpagetoday.com/posttest.cfm?testpage=16658&;TBID=16658&topicid=315" target="_blank"></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"><img style="BORDER-BOTTOM: rgb(255,255,255) 0px solid; BORDER-LEFT: rgb(255,255,255) 0px solid; BORDER-TOP: rgb(255,255,255) 0px solid; BORDER-RIGHT: rgb(255,255,255) 0px solid" src="http://mail.google.com/mail/?ui=2&;ik=a73408c7c1&view=att&th=124c37473eaf0231&attid=0.1&disp=emb&realattid=0.1.1&zw" width="320" height="218"></td>
</tr></tbody></table>
<div style="LINE-HEIGHT: 16px; 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></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></div>
<p style="LINE-HEIGHT: 15px">The investigational compound is a polymer form of naloxone that antagonizes 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 significant 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></div></blockquote></div><br>

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