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Welcome to the Cushing's Help and Support Newsletters!
If it appears
that the entire newsletter is not here, or you prefer to
read the HTML version of this newsletter on the Internet,
it is available here:
http://www.cushingsonline.com/newsletters/4-11-2007.htm.
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Dr. Theodore Friedman from Charles R. Drew University, Division of Endocrinology is currently seeking patients to participate in a research study of pituitary dysfunction. More info.
Robin writes: Getting "Flakey" in a geeky way,
Research, bookmarks, and general info to share • Testimonials http://www.cushings-help.com/testimonials.htm This site helped me through a very difficult time in my life and has been
an ongoing source of education and support as I have continued healing and
learning about my body functions From
Roxanne's bio • From
http://www.thehorse.com/ViewArticle.aspx?ID=9317
According to the FDA announcement, all pergolide products (Permax and
two generic formulas) will be withdrawn for human use. Pergolide has
been used as a treatment for Parkinson's disease. Concerns about the
serious risk of damage to patients' heart valves led to the withdrawal.
Barbara D. Forney, MS, VMD, noted in the 2007 revised edition of
Understanding Equine Medications that no information could be found
on side effects of pergolide in horses. Regarding the withdrawal, Forney said some other drugs removed from
the human market in the past are now available for veterinary use via
compounding pharmacies. Forney said she doesn't anticipate a major change in the availability
of the drug for equine use. "The reality of it is that most of the horses that are on pergolide
are already using a compounded product because of the way the drug is
dosed and economics, so it probably won't change much," Forney stated.
"But it does highlight why ethical compounding is really important to
veterinarians." FDA Department of Public Affairs spokesperson Sandy Walsh said the
manufacturers could also make the drug directly available for veterinary
use. "Pergolide is not an approved animal drug," Walsh said. "As for
deciding whether or not the product will be available for vet use, it
depends on the company. If they want to make it available for animal
use, that is their prerogative." Walsh noted three other dopamine agonists without the same risk of
side effects are available for human patients. To read the FDA withdrawal notice click
here or see below.
FOR IMMEDIATE RELEASE Media Inquiries: FDA Announces Voluntary Withdrawal of Pergolide Products The U.S. Food and Drug Administration (FDA) today announced that
manufacturers of pergolide drug products, which are used to treat Parkinson’s
disease, will voluntarily remove these drugs from the market because of the risk
of serious damage to patients’ heart valves. The products being withdrawn are Permax, the trade name for pergolide
marketed by Valeant Pharmaceuticals, and two generic versions of pergolide
manufactured by Par and Teva. Pergolide is in a class of medications called
dopamine agonists and is used with levodopa and carbidopa to manage the symptoms
(tremors and slowness of movement) of Parkinson’s disease. In 2006, an estimated 12,000 patients received prescriptions for pergolide
from retail pharmacies in the United States. Patients taking pergolide should
contact their doctors to discuss alternate treatments. Patients should not stop
taking the medication, as stopping pergolide abruptly can be dangerous. There are alternative therapies available for Parkinson’s disease, including
three other dopamine agonists that have not been associated with valvular heart
disease. The removal of pergolide products is not expected to adversely affect
patient care because of the alternative therapies available. “Based on important new drug safety information, FDA has been working with
the manufacturers of pergolide products to voluntarily remove these drugs from
the market,” said Douglas Throckmorton, M.D., deputy director of FDA’s Center
for Drug Evaluation and Research. “The FDA’s increased evaluation of post-market
safety is benefiting the public because, in this case, as new data about the
product became available, we were able to remove a less safe drug from the
market.” Two recent New England Journal of Medicine studies confirm previous findings
associating pergolide with increased chance of regurgitation (backflow of blood)
of the mitral, tricuspid, and aortic valves of the heart. Valve regurgitation is
a condition in which valves don’t close tightly, allowing blood to flow backward
across the valve. Symptoms include shortness of breath, fatigue and heart
palpitations. In light of this additional post-market safety information, the companies
that manufacture and sell pergolide will stop shipping pergolide for
distribution and, in cooperation with FDA, will withdraw the products from the
market. Permax was approved in 1988 for Eli Lilly and Company as an adjunctive
therapy with levodopa in Parkinson’s disease. Valvular heart disease was first
described in association with pergolide in 2002. In 2003, FDA asked Lilly to add
valvulopathy (abnormality of cardiac valves) to the warnings section of Permax
labeling, at which time a Dear Healthcare Practitioner letter was sent by Lilly.
In 2006, the warning was upgraded to a black box warning, the FDA’s strongest
form of warning, because of new data concerning risks of heart valve damage. FDA today is issuing a Public Health Advisory (PHA) detailing the removal of
pergolide products from the market. The PHA, which is available at
www.fda.gov/cder/drug/advisory/pergolide.htm includes information and
recommended actions for physicians, pharmacists and patients. The effect of the voluntary withdrawal on supplies of pergolide currently in
pharmacies will not be immediate. This delay will allow time for health care
providers and patients to discuss appropriate treatment options and time to
change treatments. FDA is working with the manufacturers of pergolide to determine if it might
be possible, once the drug is withdrawn from the market, to make the drug
available under an Investigational New Drug Application (IND) for those few
patients who are currently receiving pergolide and who cannot be successfully
converted to other available treatments. • From
http://clinicaltrials.gov/ NIH Clinical Trials, 10 Cushing's studies were found. • From
http://www.todaysthv.com/news/news.aspx?storyid=44118
Disease Underlies Hatfield-McCoy Feud Copyright 2007 The Associated Press. All rights reserved.
From: Add your
Helpful Hints for
Dealing with Cushing's to the website and the email Newsletters.
Roxanne was diagnosed with Adrenal Cushing's in 2002
and had an adrenal tumor removed in May of 2003 Judi updated her bio in April 2007 after her
March 21, 2007 pituitary surgery Fundraising: ===> FREE $5 DONATIONS!
<=== Thank you so much for
your support. • More upcoming local meetings are listed here Online Chats: Please join us in the Chat
Room TONIGHT at 9 PM Eastern. Click
to access through the message boards This room is always open, and has convenient links so
that you can get needed information while you're chatting. I hope to see you tonight!
©2000-2007 Cushing's Help
and Support. All rights reserved.
I've been having a lot of fun "flaking"..... I'm
exploring the new Web 2.0 technologies which include wiki's, podcasts, newsfeeds,
and flakes.....
I've built a flake for Cushing's to share what info I have with anyone who wants
to use it. I'm still working on it and have a lot more to add, but I'll do it as
I can. A lot of things I've put there point back to this site, and if it's a
link to the boards, only board members will be able to see it.
http://www.pageflakes.com/staticnrg.ashx?
I've put a feed of my bookmarks on the flake site, but I also have another
public site for them, too:
http://del.icio.us/staticnrg
The neat thing about all this is you can do this, too, and we can "network",
sharing with each other. You can incorporate my stuff in to your flake, and I
can incorporate yours. It's a way for us to share info with each other. MaryO
may want to put links to all this on here...I don't know. But it's the "new"
thang, and predicted to be how things are going.
News Items:
Media:
• Sam who has been on The Mystery Diagnosis TV Show (Discovery Health) has been invited to appear on Dr. Phil taping soon. More info as it becomes available.
Equine Cushing's Drug Pergolide to be Withdrawn for Human Use
by: Erin Ryder, News Editor
April 04 2007
Article # 9317
The FDA has announced
pergolide is to be voluntarily withdrawn for human use. Pergolide is
commonly used for horses with pituitary pars intermedia dysfunction (PPID),
also known as equine Cushing's disease.
P07-54
March 29, 2007
Sandy Walsh, 301-827-6242
Consumer Inquiries:
888-INFO-FDA
Agency Working with Product Manufacturers
(AP) The most infamous feud in American folklore, the long-running battle
between the Hatfields and McCoys, may be partly explained by a rare,
inherited disease that can lead to hair-trigger rage and violent outbursts.
Dozens of McCoy descendants apparently have the disease, which causes high
blood pressure, racing hearts, severe headaches and too much adrenaline and
other "fight or flight" stress hormones.
No one blames the whole feud on this, but doctors say it could help explain
some of the clan's notorious behavior.
"This condition can certainly make anybody short-tempered, and if they are
prone because of their personality, it can add fuel to the fire," said Dr.
Revi Mathew, a Vanderbilt University endocrinologist treating one of the
family members.
The Hatfields and McCoys have a storied and deadly history dating to Civil
War times. Their generations of fighting over land, timber rights and even a
pig are the subject of dozens of books, songs and countless jokes.
Unfortunately for Appalachia, the feud is one of its greatest sources of
fame.
Several genetic experts have known about the disease plaguing some of the
McCoys for decades, but kept it secret. The Associated Press learned of it
after several family members revealed their history to Vanderbilt doctors,
who are trying to find more McCoy relatives to warn them of the risk.
One doctor who had researched the family for decades called them the "McC
kindred" in a 1998 medical journal article tracing the disease through four
generations.
"He said something about us never being able to get insurance" if the full
family name was used, said Rita Reynolds, a Bristol, Tenn., woman with the
disease. She says she is a McCoy descendant and has documents from the
doctor showing his work on her family.
She is speaking up now so distant relatives might realize their risk and get
help before the condition proves fatal, as it did to many of her ancestors.
Back then, "we didn't even know this existed," she said. "They just up and
died."
Von Hippel-Lindau disease, which afflicts many family members, can cause
tumors in the eyes, ears, pancreas, kidney, brain and spine. Roughly
three-fourths of the affected McCoys have
pheochromocytomas, tumors of the
adrenal gland.
The small, bubbly-looking orange adrenal gland sits atop each kidney and
makes adrenaline and substances called catecholamines. Too much can cause
high blood pressure, pounding headaches, heart palpitations, facial
flushing, nausea and vomiting. There is no cure for the disease, but
removing the tumors before they turn cancerous can improve survival.
Affected family members have long been known to be combative, even with
their kin. Reynolds recalled her grandfather, "Smallwood" McCoy.
"When he would come to visit, everyone would run and hide. They acted like
they were scared to death of him. He had a really bad temper," she said.
Her adopted daughter, another McCoy descendant, 11-year-old Winnter
Reynolds, just had an adrenal tumor removed at Vanderbilt Children's
Hospital. Teachers thought the girl had ADHD, attention deficit
hyperactivity disorder. Now, Winnter says, "my parents are thinking it may
be the tumor" that caused the behavior. "I've been feeling great since they
took it out."
Her adoptive father, James Reynolds, said of the McCoys: "It don't take much
to set them off. They've got a pretty good temper.
"Before the surgery, Winnter, when we would discipline her, she'd squeeze
her fists together and get real angry and start hollering back at us,
screaming and crying," he said.
As for the older McCoys, "they just started dropping dead of the tumors," he
said. "They didn't know what it was. A name wasn't really put on the disease
until 1968. That's when one of my brothers-in-law had to have surgery, to
have some tumors removed in his brain. They started to notice tumors
occurring in each of the familmembers."
Dr. Nuzhet Atuk at the University of Virginia in Charlottesville and
geneticists at the University of Pennsylvania studied the family for more
than 30 years, Rita Reynolds said.
"They went back on the genealogy and all of that stuff," she said. "They
called it madness disease. They said that it had to be coming from the VHL.
Our family would just go off, even on the doctors."
Now 85 and retired, Atuk said he could not talk about his work because of
medical confidentiality.
Rita Reynolds had two adrenal tumors removed a few years ago. Her mother and
three brothers also had them. So do McCoy descendants in Oregon, Michigan
and Indiana, she said.
"When you have these tumors, you're easy to get upset," said Rita's mother,
Goldie Hankins, 76, of Big Rock, Va., near the Kentucky-West Virginia
border. "When people get on your nerves, you just can't take it. You get
angry because your blood pressure was so high."
Still, many are dubious that this condition had much of a role in the bitter
feud with the Hatfields, which played out in the hill country of eastern
Kentucky and West Virginia for decades.
Some say the feud dates to Civil War days, when some members of the families
took opposite sides. It grew into disputes over timber rights and land in
the 1870s, and gained more notoriety in 1878, when Randolph or "Old Randal"
McCoy accused a Hatfield of stealing one of his pigs. The hostilities left
at least a dozen dead.
"The McCoy temperament is legendary. Whether or not we can blame it on
genes, I don't know," said Ron McCoy, 43, of Durham, N.C., one of the
organizers of the annual Hatfield-McCoy reunion. "There are a lot of
underpinnings that are probably a more legitimate source of conflict."
"There was a lot of inter-marrying" that could have played havoc with the
gene pool, he conceded.
Another relative, Bo McCoy, of Waverly, Ohio, said he had never heard talk
of the disease although he has been diagnosed with a different adrenal gland
problem, Cushing's syndrome.
Even Reo Hatfield, who drafted the "truce" the two families famously signed
in 2003 to officially end hostilities, doubted the role of the McCoys'
disease in the feud.
"I would be shocked" if doctors blamed it on illness, he said.
Altina Waller, a professor of history at the University of Connecticut and
author of a book about the feud, agreed.
"Medical folks like to find these kinds of explanations. Like the Salem
witchcraft thing. That book came out about how that was caused by wheat that
was grown that had this parasite or mold or fungus or something that caused
everybody in Salem to go nuts," she said.
"How does it explain the other dozen or so feuds that I've looked at in
other places?" she asked, citing disputes over coal and other issues. "The
rage and violence as such was not confined to McCoys."
She acknowledges that an argument could be made for seeing the McCoys as the
more aggressive of the clans.
"One of the reasons the McCoys don't like me as much in the Tug Valley as
the Hatfields do is that I seem to suggest that Randal McCoy, the patriarch
of the family, was sort of irrational and flamboyant and did jump to, into
wanting violence more than, say, Anderson Hatfield," Waller said.
These days, the "feud" has taken a far more civil tone and all but
disappeared, members of both families say. The last time it surfaced was in
January 2003. McCoy descendants sued Hatfield descendants over visitation
rights to a small cemetery on an Appalachian hillside in eastern Kentucky.
It holds the remains of six McCoys, some allegedly killed by the Hatfields.
• From NIH Clinical Trials. 90 Adrenal Studies
Pituitary:
• From
NIH. 85 Pituitary Clinical Trials:
Newest
Bios:
To add or
edit your bio, http://www.cushings-help.com/forms/bio.htm
Adrenal
Patients
Cindi
Cindi has
PPNAD (Primary pigmented nodular adrenocortical disease) and has
had both adrenal glands removed.
Dublin, California
Roxanne (Roxanne)
Gaston, Oregon
Not Yet Diagnosed
Patients
Erica (Erica)
Erica is not yet diagnosed with Cushing's but she
gained over 50 pounds in 6 months. She has had a high UFC and is
being sent to an endocrinologist for further testing.
Lawrence, Kansas
Kay (casperslove)
Kay has possible Cushing's because of high cortisol
and ACTH. She has been diagnosed with PCOS and endometriosis.
New Jersey
Peggy (Peggy)
Peggy's mom Helen was diagnosed with Cushing's when
she was a child, but her doctor advised her she only had a mild case
and did not need to be treated. Helen has type 2 Diabetes and has
had a pacemaker installed. She recently had a UFC and has been
advised that her she is making too much cortisone.
Cushing, Oklahoma
Sandra (sncw)
Sandra is not yet diagnosed with Cushing's but
recently recently read an article in
Reader's Digest and recognized herself. She has been diagnosed
with premature ovarian failure, hypothyroidism and fibromyalgia
Florida
Pituitary
Patients
Heike (Heike)
Heike is from Tallahassee, Florida. Heike has decided
to go through another, third, transsphenoidal surgery scheduled for
August 22, 2006. Her second pituitary surgery was June 28, 2006. It
was not successful and she had to choose between a bilateral
adrenalectomy or stereotactic radiation. Her first surgery was in
Hamburg, Germany 13 years ago and was exploratory. Heike updated her
bio after her third pituitary surgery also done in Hamburg/Germany.
She developed Diabetes Insipidus after the last surgery.
Tallahassee, Florida
Iona (iona)
Iona has had a tumor on her pituitary removed Dec
2004. May 2006 had radiosurgery on the tumor that reappeared August
2005. She is on a waiting list for a BLA (bilateral adrenalectomy)
Salisbury,
United Kingdom
Judi (Cushie Judi)
Judi was first diagnosed with Cushing’s
1/12/06, An MRI of the pituitary revealed a hypo-enhancing lesion
approximately 5 x 4 x 3 mm. A CT of the adrenal glands in July 2006
was read as normal, but a later CT of the abdomen with contrast
demonstrated a possible 1.3 cm low-density lesion in the left
adrenal gland.
Batavia, NY
Laura (laurak)
Laura was first diagnosed with Cushing's in 1997 and
had 1/2 her pituitary removed. She had the rest of her pituitary
removed 2 years later when she had a reoccurrence. She has had
radiation and has developed hypothyroidism post-secondary to
Cushing's
Greenfield, Wisconsin
Lindsay (Lindskf)
Lindsay had unsuccessful surgery to remove a
pituitary tumor and will be having radiation (gamma knife) this
week. She is on Ketoconozole to lower her cortisol but doesn't think
that is working.
Madison, Connecticut
Renae (Renae)
Renae is 16 years old and had pituitary surgery
December 13, 2006. She recently recently found out that the surgery
was unsuccessful and has three different options: redo the surgery,
radiation or removal of her adrenal glands (BLA).
Swarthmore, Pennsylvania.
Steroid-Induced
Patients
Kay
(casperslove)
Kay has possible Cushing's because of high cortisol
and ACTH. She has been diagnosed with PCOS and endometriosis.
New Jersey
To add or
edit your bio, http://www.cushings-help.com/forms/bio.htm
Newest Helpful
Doctors:
Dr. Brian Michael
3311 East Murdock
Wichita
Kansas
Phone: 316-689-9989
Dr. Michael has been a tremendous help
in diagnosis and treatment of my Cushing's disease. He has gone out
of his way to make it right. He knows his stuff and is a great
person.
Wichita, KS
Brooke Swearingen, MD
Massachusetts General Hospital
15 Parkman Street,
WAC 331
Boston, MA 02114-3117
Phone: (617) 726-3910
Fax: (617) 726-7546
Dr. Swearingen is a gifted and highly
skilled neurosurgeon with years of experience in performing transsphenoidal
surgery for pituitary tumors. Experience is a key factor in the success of
any surgery, but especially important when dealing with tiny microadenomas
in the brain. He is a man of few words, but his success rate speaks volumes!
Boston, MA
To add your
helpful doctor, http://www.cushings-help.com/forms/doctor.htm
The Cushing's
Store
for all kinds of Cushing's Labeled
clothing, US Postage Stamps, Teddy Bears, coffee mugs, totebags and much more.
Great for your endo or Secret Someone.
Remember iGive.com...
... all year round.
iGive.com allows online stores to
donate a percentage of their profit to running these Cushing's
Support sites: the message boards at http://cushings.invisionzone.com/index.php, http://www.cushings-help.com, http://www.cushings-info.com,http://www.cushings-support.com and
http://www.cushingsonline.com.
See the list of participating merchants
Each new member
who joins iGive
and shops will earn an
additional $5 for the Cushing's Support sites! That's on
top of the standard donations from shopping (up
to 26%
of each purchase benefits Cushing's
Help and Support!).
Only one hitch:
supporters must shop within 45 days of joining to get
the bonus. With over
600 stores now at iGive.com, we have
something for everyone!
Upcoming Conventions, Meetings and Seminars:
• DC Metro Area, TBA More
info as it becomes available.
• June 2-5, 2007, ENDO 2007, Toronto, Canada, Metro
Toronto Center. More info as it becomes
available.
• October 6, 2007,
Rockford, IL. More info as it becomes
available.
If you are not yet a member of the message boards,
please use this page: http://cushings.invisionzone.com/chatroom.htm
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