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RE: Chronic PKD pain
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Vicki Jones
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Nov 03, 2009 12:22 PST
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Craig -
A few years back, my husband found information online that said studies show blueberry juice is just as effective as cranberry juice, for the urinary tract.
Is that true, Diane? I drink 4 oz blueberry juice a day, rather than cranberry juice, and haven't had a bladder infection since I started doing that. It certainly tastes better to me than cranberry juice, and my stomach can't take cranberry juice (too acid when it hits my stomach).
Vicki
*******
--- On Tue, 11/3/09, Craig Wolf <craig-@wswa.org> wrote:
From: Craig Wolf <craig-@wswa.org>
Subject: RE: PKD-PLD Chronic PKD pain
To: "pk-@topica.com" <pk-@topica.com>
Date: Tuesday, November 3, 2009, 9:55 AM
FYI
–
A
similar story to JC in terms of results, although I haven’t ever experienced
the same level of pain she did or experienced any ruptures to my knowledge.
But I used to have fairly regular achiness bilaterally – especially noticeable
after certain food intake. Then I changed my diet and became much more
active physically and really don’t have that issue any more.
I
no longer eat red meat, pork, chocolate, soda’s, chips/pretzels, milk, potatoes
(except for sweet potato at Thanksgiving). No caffeine period. And I have
gradually been reducing my protein intake, sometimes not eating any chicken
or seafood for a day or two in a row. And I drink a glass of cranberry
juice almost daily as well (sometimes mixed with apple or orange juice for
variety and flavor).
I
also run/exercise 4-5 times a week – just completed the Army Ten Miler in
DC.
Craig
From: jcro-@aol.com
[mailto:jcro-@aol.com]
Sent: Tuesday, November 03, 2009 9:42 AM
To: pk-@topica.com
Subject: Re: PKD-PLD Chronic PKD pain
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
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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