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Re: Chronic PKD pain
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Vicki Jones
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Nov 04, 2009 13:52 PST
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Diane -
Sure!
Vicki
*******
--- On Tue, 11/3/09, Diane <Dia-@pkdiet.com> wrote:
From: Diane <Dia-@pkdiet.com>
Subject: Re: PKD-PLD Chronic PKD pain
To: pk-@topica.com
Date: Tuesday, November 3, 2009, 6:38 PM
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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