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Re: Chronic PKD pain
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JCRO-@aol.com
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Nov 04, 2009 03:41 PST
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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,
_Di-@pkdiet.com_ (mailto: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_
(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, _jcr-@aol.com_ (mailto: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,
_Di-@pkdiet.com_ (mailto: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_
(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)
<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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