SARCOIDOSIS COMMUNITY NEWS
vol. 7
issue I
-- T A B L E O F C O N T E N T
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@Editor's Notes
Commentary from the Editor
Greetings Sarcoid Community,
A new address All of our websites are now under
the new Sarcoidosis Online Site (SOS) server and new domain (URL)
name. Please go to the websites and update your links as the old
domain is now shut down.
Our old URL was
http://www.blueflamingo.net/sarcoid
(this no longer works) Our new domain is
http://www.sarcoidosisonlinesites.com
Our new email for all sites is
jaysjob@gmail.com
Newsletter frequency We have switched again
updating our frequency of the newsletter. As new information and
treatments are not as often as we all would like and the amount of
work that goes into each issue of the newsletter we are changing to
a semi-annual (two times per year) release date. As information,
treatments and support for the newsletter increases will will
incorporate more frequent release dates.
Addressing growing concerns We were contacted by
many patients asking if there were a method of eliminating flare-ups
of sarcoidosis or even curing sarcoid by simply wearing sunglasses
and avoiding sunlight, even to wear special clothes to cover up and
making our homes as dark as possible to avoid exposure. We called
upon Dr. Norman Soskel to help us in explaining the correlation of
vitamin D, exposure to sunlight and ingestion of calcium and how it
affects patients with sarcoidosis. He was generous in writing an
article exclusively for this newsletter and explained it in layman’s
terms.
Donation received A very special
thank you and acknowledgment goes out to Maria Costa for her
generous financial support of Sarcoidosis Online Site. Her funding
allows us to continue our work to bring timely, valuable information
to the people who need it the most, the Sarcoidosis Community. Thank
you Maria! Your donation will help us maintain our websites just at
the time we needed it the most. You are a wonderful and caring
person. Thank you for thinking of others!
Volunteers and donations As always, volunteers
and donations are needed. Anyone interested in writing copy,
interviewing specialists, submitting a chuckle, observation or any
other information for the next issue or donating financially please
contact the us via email at:
jaysjob@gmail.com a.s.a.p.
We welcome
suggestions and submissions for new or existing columns, story
ideas or nominations for The
Sarcoidosis Golden Lifesaver Award. Just send an email to
jaysjob@gmail.com
We hope you enjoy this issue as we strive to bring
you the most current medical information available.
Editor - Sarcoidosis Community News Website Administrator -
http://www.sarcoidosisonlinesites.com/
Email - jaysjob@gmail.com
PS. Check out the
visitor counter at the bottom of the page! It does
a heart good to know we are not alone!
Back to Table of Contents
1. In This Issue Summary of articles in this
newsletter
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We start off with our EXPANDED
Email Bag- Reader Feedback section. We have included new
support groups, doctors and awards.
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The Pharmaceutical Front
contains an article about a new study helping researchers zero
in on a potential treatment for Cushing's syndrome.
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Our Healthy Human contains
two articles:
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The first is how to overcome the difficulty
in finding credible medical information on the Internet as
patients and care givers look to the internet for up to date
information on sarcoidosis.
-
The second is about a study by Brigham and
Women's Hospital and Harvard Medical School in Boston, Mass
that suggests the more optimistic you are, the better your
lungs function.
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In the Ask The
Doctor section we continue to explore not only how to find
credible information but address specific theories that are
currently being discussed online.
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FYI in this issue features
two articles.
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The first, examines how U.S. voters
responded in the latest elections to a number or ballot
measures across the country involving public health and
health care.
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The second focuses on a study involving
Pentoxifylline as an alternative therapy to steroids for the
treatment of pulmonary sarcoidosis.
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In the Chuckle,
interesting notes taken from over two dozen actual patient
medical charts. You need to see it to believe it!
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In Computer Corner,
illustrated tips on two subjects:
-
What if you could set your computer up so it
alerts you when your pinky finger wanders off and taps the
Caps Lock key?
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How to remove / uninstall unwanted software
from your computer. Here are the step by step procedures.
-
From The Drs Guide, How
a recent peer reviewed study sought to understand if inhaled
corticosteroids also produced a decrease in bone density.
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Our Spotlight Site, The
Atlas of Granulomatous Diseases. Photographs of lungs and other
sites affected by sarcoidosis will also be of interest to
patients and others.
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In Read All About It!
Three book reviews. each book addressing certain aspects of
sarcoidosis and how it affects our lives. From the personal to
the clinical.
Back to Table of Contents
2. Email bag - Announcements Share your opinions and critiques
about past issues
Would you like to give your opinion, observation or
critique about a past issue? Would you like to suggest a topic for a
future issue? Want to tell us what you like or don't like about the
newsletter? Submit the information to our editor at:
jaysjob@gmail.com
Thanks!
-
Marcia Beckman says: Hi Jay,
…I posted a note on your wonderful
patient to
patient website…. What a great thing for you to do. It
is so sad to see how little info the doctors give out. I
wish you well and thank you for doing this great service.
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I really find the New Support
Groups and Updates section of the newsletter (July issue)
very, very helpful. I get emails from people all over
seeking support groups in their area. Again, thanks for all
your tireless work. You're providing a much needed resource
for us all! Always Caring, Kathy
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I wanted to thank you for
listing the article on the drug assistance program. I've
been passing that info on my members and anyone else needing
help w/prescription drug. I often use your newsletter for
reference and information. THANKS MUCH for all your tireless
work!!!!
-
! have recently been told I
have costochondritis. I have
read your info and can
relate, I'm now in the position where the doctors want
me to slow down on the job, place restriction on the job.
I'm trying real hard to keep going, I work for a company
that is very over worked, lack of help, and they won't hire
more. I've had to do some jobs that the doctors feel
have caused this. On top of this I have arthritis,
tendonitis, bursitis, carpel tunnel, and fibromyalgia. There
are days I just want to cry and give up, I just want to say
thanks for this site!!!
-
I just wanted to thank you
for having such a newsletter. I am 29 yrs old and feel at
times I am the only person with this disease. It is great to
have a newsletter like this. Thank you once again for making
me feel not alone! -MariaElaina Landolfi
Would you like to give your opinion, observation or
critique about a past issue? Would you like to suggest a topic for a
future issue? Want to tell us what you like or don't like about the
newsletter? Submit the information to our editor at:
jaysjob@gmail.com
Back to Table of Contents
2a. Special Section The Sarcoidosis Golden
Lifesaver Award
This is a special section to make you aware of
an award called The Sarcoidosis Golden Lifesaver Award.
This
award recognizes Internet websites that promote sarcoidosis
awareness involving patient support and medical information in a
well organized, well maintained site. It is intended to include
any sarcoid related website that would like to be involved in
providing patients, family members/ loved ones of sarcoid
patients a place to be exposed to the many different and diverse
sarcoid websites on the Internet.
This award is being sponsored by the Sarcoidosis
Online Sites website developers in an effort to recognize all
the other websites on the Internet dedicated to sarcoidosis
awareness. Over the past three years Sarcoidosis Online Sites
has become known and trusted by the sarcoidosis community for
providing reliable information about sarcoidosis, free of
charge, to patients, their friends and families.
The Sarcoidosis Golden Lifesaver Award is given
out by nomination only. To nominate a website for the award send
the site name and location (URL address) to
jaysjob@gmail.com .
Back to Table of Contents
3. Stages of Pulmonary Sarcoidosis Describes the four
types of pulmonary sarcoidosis
It is important to emphasize that the term stages
can be misleading in-that patients do not always graduate from a
mild case to a more serious case. Stage one does not necessarily
progress to stage two, three etc. This is why some physicians refer
to these as types rather than stages. They do not imply a
progression, rather these are patterns seen on the x-rays.
They give information about prognosis (the likelihood of
improvement). In many cases the disease remits and never returns.
Find out about the different stages.
The classifications of pulmonary sarcoidosis are
listed below with the explanation after in parenthesis( ).
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Stage I or Type I
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Stage II or Type II
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Stage III or Type III
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Stage IV or Type IV
Back to Table of Contents
4. The Pharmaceutical Front Medications and their
effects
Diabetes drugs may help Cushing's syndrome
By Keith Mulvihill
NEW YORK (Reuters Health) - A new study in mice is
helping researchers zero in on a potential treatment for Cushing's
syndrome, a hormone disorder that can be caused by a tumor in the
brain's pituitary gland.
While such tumors can be removed surgically, this
may not always cure the disease and there are no drugs suitable to
treat the condition. The new study suggests that commonly used
diabetes drugs may help such patients, according to a report in the
November issue of the journal Nature Medicine.
Cushing's syndrome results from high levels of the
hormone
cortisol, and can cause fat accumulation in the upper body and
face, and thinning of the arms and legs. Patients can experience
high
blood pressure and high blood sugar, along with
depression, fatigue, irritability and weakened bones.
Cortisol levels rise when another hormone, called
adrenocorticotropic hormone (ACTH),
is overproduced by the brain's pituitary gland. ACTH stimulates the
adrenal glands, which sit on top of the kidneys, to produce the
cortisol, explained lead author Dr. Anthony P. Heaney of the
Cedars-Sinai Medical Center in Los Angeles, California during an
interview with Reuters Health.
Cushing's syndrome can be caused by a tumor of the
pituitary gland, a tumor of the adrenal gland or by long-term use of
drugs, called corticosteroids, commonly used to treat illnesses,
such as sarcoidosis rheumatoid arthritis and asthma.
In the current study, Heaney and colleagues found
that a protein called PPAR-gamma, which is found on pituitary gland
tumor cells, appears to be linked to overproduction of ACTH.
The researchers injected mice with ACTH-secreting
pituitary tumor cells and then treated them with commonly used
diabetes drugs, rosiglitazone (Avandia)
and troglitazone, or an inactive placebo. Such drugs are known to
inhibit PPAR-gamma, which also plays a role in sugar metabolism.
Troglitazone (Rezulin) was withdrawn from the US market in 2000
after it was linked to liver damage and deaths in some patients.
The investigators found that production of ACTH, as
well as the chemical equivalent of human cortisol in mice, dropped
substantially.
"We saw pretty dramatic reduction in ACTH and
cortisol-like hormone in the mice that got either of the drugs,"
Heaney told Reuters Health. "There was an 85% reduction in ACTH and
a corresponding 96% reduction in their cortisol-like hormone."
In addition, the drugs caused the tumor cells to die
and the overall size of the tumors to shrink, Heaney explained.
"Since we know that PPAR-gamma plays a role in the
pituitary tumors that cause Cushing's syndrome, we may be able to
treat the illness effectively with (the diabetes drugs)," he added.
The study was funded by the Doris Factor Molecular
Endocrinology Laboratory, the Annenberg Foundation, and a National
Institutes of Health grant.
SOURCE: Nature Medicine 2002;8:1281-1287
If you are a physician with experience in the
treatment of sarcoidosis and would like to write an article for this
newsletter please contact us at
jaysjob@gmail.com
Back to Table of Contents
5. The Healthy Human General tips for better health
1.) Buyer (or in this case
Patient) "Be-wary!" 2.) Optimistic People
Actually Breathe Easier, Study says
Buyer (or in this case
Patient) "be-wary!"
A major problem with internet research is the
difficulty in finding credible medical information. As the internet
grows this problem only get worse as patients and care givers look
to the internet for up to date information on sarcoidosis. We found
this especially troubling when we encountered sites designed to look
to the layman like credible medical information even including
"published papers" by PhD’s. These sites offer what looks like a
"cure" if you only follow their regimen. Some of the medical
information is based on scientific information, but the conclusions
drawn are far from credible.
Excerpted from The Official Patient's Sourcebook on
Sarcoidosis by Icon Health Publications, James N. Parker, Philip M.
Parker. Copyright © 2002. Reprinted by permission. All rights
reserved. Though many physicians and public officials had thought
that the emergence of the Internet would do much to assist patients
in obtaining reliable information, in March 2001 the National
Institutes of Health issued the following warning: "The number of
Web sites offering" health-related resources grows every day. Many
sites provide valuable information, while others may have
information that is unreliable or misleading." Since the late 1990s,
physicians have seen a general increase in patient Internet usage
rates. Patients frequently enter their doctor's offices with printed
Web pages of home remedies in the guise of latest medical research.
This scenario is so common that doctors often spend more time
dispelling misleading information than guiding patients through
sound therapies.
Here are a few ideas to keep in mind while
researching the net for sarcoidosis information:
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**Are the "published medical papers" peer
reviewed? This means that it has gone through rigorous
scrutiny by medical peers/other physicians in the same field.
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**Are the "papers" written by a licensed
practicing physician (M.D.)? There are many people who have
gone to school and have a PhD, but this can be in any field. A
teacher, lawyer, mathematician etc. can hold a PhD but know
nothing about the field of medicine. A licensed practicing
medical doctor (MD) means that they have gone through the
schooling and training to practice in the field of medicine.
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**We are all looking for answers. Sarcoidosis
is a very rare disease. This makes us especially vulnerable
those that will take advantage of our sensitive situation.
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**Use common sense. When a cure for
sarcoidosis is found you can bet that it will be all over the
news. Every sarcoidosis specialist in the world will take
notice. If a website is stating "the medical community won’t
listen to me" take that as a warning that the information is
probably not credible.
If you need to find a credible sarcoidosis
specialist in your area check out the Dr. Database at
www.sarcoidosisonlinesites.com.
Cheer Up, Breathe Better
Optimistic people actually breathe easier, study says
MONDAY, May 20 (HealthScoutNews) -- Don't worry,
breathe happy. The more optimistic you are, the better your lungs
function, says a new study from Brigham and Women's Hospital and
Harvard Medical School in Boston, Mass. The study included 670 men
whose average age was 63 at the start of the study. They were
followed for an average of eight years and had an average of three
lung exams during that time. A special questionnaire was used to
determine how they felt about their lives. The men shown to be more
optimistic had significantly higher lung function and a slower rate
of decline in lung function than their more pessimistic
counterparts. The findings were to be presented today at the
American Thoracic Society's annual meeting in Atlanta. The
researchers say this is the first study to link optimism and lung
function over time. They suggest a person's outlook may influence
the body's immune system processes that play a role in airway
inflammation associated with chronic obstructive pulmonary disease.
They plan to examine whether optimism has the same effect on lung
function in women, younger people and people of different races. --
Robert Preidt
Copyright © ScoutNews, LLC. All rights reserved.
Back to Table of Contents
6. Sarcoidosis Awareness Tips on promoting public
awareness for sarcoidosis
Starting A Self-Help / Mutual Support Group By
Sandra Conroy
and Brenda Harris
A self-help group can offer persons with
sarcoidosis an opportunity to meet with others and share their
experiences, knowledge, strengths and hopes. Run by, and for
their members, a self-help group can be described as a "mutual
help" group since members are helping one another. Dozens of
different self-help groups are started each week across the
nation by ordinary people with a little bit of courage, a fair
sense of commitment, and a heavy amount of caring. The following
guidelines are based on experiences at the Self-Help
Clearinghouse, helping hundreds of individuals to start
different groups. While there is no one recipe for starting a
group (you will be looking at local resources and members
specific needs), we have listed below a few general
considerations you may find helpful.
CLICK
HERE FOR
THE FULL STORY
How Anyone Can Promote Public Awareness for
Sarcoidosis By Brenda Harris, M.S.
Since being diagnosed with sarcoidosis many of
us have said to ourselves "Why can't someone find the cause and
cure of this disease?" "Why isn't sarcoid as recognized as
other diseases?" We Sarcoidians have to band together to promote
this debilitating disease. We can't afford to wait
for someone famous to do it for us. Even doctors and medical
professions need a reason to focus on research and answering our
questions. If each of us could do our small part it would
greatly help in promoting public awareness for sarcoidosis.
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Write an article in a newspaper or magazine
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Appear on your local cable TV station
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Participate in or sponsor your own
sarcoidosis conference, lecture or health fair
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Wear a purple "sarcoidosis awareness" ribbon
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Simply talking to others about your disease
What other ways can you think of to promote
sarcoidosis? What ways have you promoted sarcoidosis? Promoting
sarcoidosis awareness is the only way that this disease will be
recognized like other autoimmune diseases. The opportunity to
educate and promote sarcoidosis really is countless.
Sarcoidosis Awareness Ribbons
In our continuing efforts to promote public
awareness, the National Sarcoidosis Resource Center (NSRC) is
proud to offer its ribbon campaign. For a $1.00 donation, you
will receive a beautiful purple ribbon imprinted with the words
"Sarcoidosis Awareness". We are committed to see that
sarcoidosis receives the recognition it deserves. As these
lovely ribbons are worn, awareness will increase. We urge you to
get other involved. For additional information, write to the
National Sarcoidosis Resource Center P.O. Box 1593,
Piscataway, NJ 08855-1593
Back to Table of Contents
7. Ask the Doctor Our online physician answers
questions about sarcoidosis
Preface: We were contacted by many patients that
there was a method of eliminating flare-ups of sarcoidosis by simply
wearing sunglasses and avoiding sunlight, even to wear special
clothes to cover up and making our homes as dark as possible to
avoid exposure. They were told to avoid all foods with vitamin D and
calcium as this would deter flare-ups of sarcoidosis.
We called upon Dr. Norman Soskel to help us in
explaining the correlation of vitamin D, exposure to sunlight and
ingestion of calcium and how it affects patients with sarcoidosis.
He was generous in writing an article exclusively for this
newsletter and explained it in layman’s terms. It appears as though
for a select few there may be a link, but it is far too early to
come to any drastic conclusions. Dr. Norman Soskel’s best advice for
these few patients is in addition to medication, to refrain from
overindulgence in exposure to sunlight and ingestion of calcium and
vitamin D, but indicates that total abstinence is usually not
required or recommended. Of course he recommends talking to your
health care provider as a first step.
Dr. Norman Soskel runs a non-profit organization and
an information rich website at:
http://www.sarcoidcenter.com.that helps give credible
information to sarcoidosis patients and caregivers.
The Significance of Calcium and Vitamin D in
Sarcoidosis
Norman T. Soskel, MD, FACP, FCCP
Sarcoidosis Center
Memphis, Tennessee
Calcium metabolism in patients with sarcoidosis has
been studied since the first intriguing reports by Harrell, et al in
1939 demonstrated elevated serum levels of calcium (hypercalcemia)
in those patients. Even more common is hypercalciuria (elevated
calcium in the urine). Exposure to sunlight is believed to
contribute to this by way of vitamin D metabolism and is
counteracted with therapy by avoiding sunlight as well as
corticosteroid ingestion. Newer data suggests immunological
functions of vitamin D with respect to granuloma formation. The
exact significance of these will be discussed in this communication.
A detailed scientific discussion is beyond the scope
and intent of this article. The major purpose is to discuss in terms
most people can appreciate, the way in which calcium is handled by
the body in normal individuals and in people with sarcoidosis, what
health concerns result and how and when they are treated.
A certain amount of scientific/medical jargon is
required but this will be kept to a minimum.
Calcium and Vitamin D Metabolism Calcium is taken
in orally and is absorbed in the gastrointestinal tract. It is
excreted through the kidneys into the urine. Additional calcium can
be reclaimed from the bones. This process is regulated by vitamin D
and parathyroid hormone, among other factors. Vitamin D enhances
absorption in the GI tract but not excretion in the kidneys. The
latter is determined by calcium fluxes from the gut and bone.
Vitamin D is produced in the skin as a result of exposure to
ultraviolet B rays from sunlight in the form of a precursor that is
inactive. It spontaneously converts to vitamin D3 which is initially
inert. In order to become biologically active it must undergo
addition of two chemicals called hydroxyl groups. The first is
attached in the liver forming 25 hydroxyvitamin D3. The second is
added in the kidney to form 1,25 dihydroxy-vitamin D3 or
1,25(OH)2-D3 which is the active form of the hormone, sometimes
referred to as calcitriol. A major finding was that the macrophages
(cells) can convert the inactive to the active form of vitamin D in
the granulomas of sarcoidosis.
Hypercalcemia and Hypercalciuria in Sarcoidosis
While it is true that hypercalciuria is three times more common than
hypercalcemia in sarcoidosis, several important discoveries aid our
understanding of the uniqueness of the findings in that disease. The
site of overproduction of calcitriol is extrarenal. Alveolar
macrophages (cells in the lungs) make calcitriol in sarcoidosis,
specifically the macrophages in the granulomas themselves. Another
important observation is the fact that hypercalcemia can occur in
other granulomatous diseases. Hypercalciuria may occur without
hypercalcemia, but the reverse is not true; that is, hypercalcemia
is always associated with hypercalciuria. Hypercalcemia, if extreme,
can cause severe health problems, however, this rarely occurs even
in the worst cases of sarcoidosis. Development of kidney stones can
occur, especially with hypercalciuria, and, if left unchecked, could
lead to kidney damage and even kidney failure. But, again, this is
very uncommon and can be avoided by monitoring very simple
parameters such as serum and urine calcium levels and paying
attention to flank pain and other symptoms of kidney stones.
Additional Effects of Vitamin D in Sarcoidosis
Recently it has been demonstrated that calcitriol affects the immune
system in a manner that favors granuloma formation. Various immune
cells have receptors for vitamin D. When vitamin D binds to these
receptors, lymphocytes (a type of white blood cell) proliferate,
immunoglobulin (antibody) production increases and
monocytes/macrophages differentiate into the types of cells that
form granulomas. One reference demonstrates that calcitriol
stimulates macrophages in the granulomas to make angiotensin
converting enzyme (ACE) which has been used as a marker for
sarcoidosis for many years. In turn, ACE may stimulate macrophages
to perform many of their protective functions. Overall this suggests
that calcitriol may favor mechanisms that protect against invasion
by foreign bodies. However, the data could also be interpreted as
being detrimental or even just neutral to the whole process.
Clear-cut ramifications of these findings awaits further study as it
is too premature to formulate conclusions at this time. Clinical
trials involving patients (not only cells in culture) need to be
performed.
Therapy and Other Recommendations Not everyone
with sarcoidosis needs therapy. Furthermore, not everyone with
hypercalcemia or hypercalciuria needs therapy. The magnitude of
elevations of calcium levels as well as the duration of elevation
will determine the need for therapy. Frequently, elevations are
transient and require no therapy. Chronic elevations might need to
be treated. Prednisone (a corticosteroid) is usually the drug of
choice since it can reduce production of calcitriol fairly quickly.
Usually the effect on lowering serum calcium is noticeable within
3-5 days. The effect on urinary calcium occurs shortly thereafter,
about 7-10 days. This short duration of therapy usually minimizes
the side effects, but, if the side effects are unbearable,
chloroquine or hydroxychloroquine can be used. Ketoconazole has been
used but with variable results, and most physicians do not use it
for this purpose. Dietary restriction of calcium is needed but not
total elimination of calcium from the diet. The same can be said for
sunlight; it is not necessary to totally avoid sunlight, just to
minimize excessive exposure.
Summary Hypercalcemia and hypercalciuria occur in
a minority of patients with sarcoidosis. Usually the consequences
are minimal, but, if left unchecked, could lead to kidney stones and
even kidney failure. Mechanisms suggest a broader role for vitamin D
than just hormonal, and may include various immunologic regulatory
functions. While these functions are intermediary and not causal,
suppression of some of them by corticosteroids or other
immunosuppressive medications could play a role in controlling some
of the manifestations of sarcoidosis. More accurate and more
clinically oriented studies are required before further implications
can be made at this time. In addition to medication, simple measures
may be of benefit in a subgroup of patients. These include
refraining from overindulgence in exposure to sunlight and ingestion
of calcium and vitamin D. However, total abstinence from these
substances is not usually required or recommended.
References
1. Harrell GT and Fisher S. Blood chemical
changes in Boeck’s sarcoid, with particular reference to
protein, calcium and phosphatase values. J. Clin Invest
18:687-693, 1939.
2. Scadding G. Sarcoidosis. Eyre and
Spottiswoode, London., 1967, pp. 193, 338, 340, 341, 346, 347,
348, 349, 352, 353, 354, 509.
3. Barbour GL, Coburn JW, Slatopolosky E.
Hypercalcemia in an anephric patient with sarcoidosis.
Evidence for extrarenal generation of 1,25-dihydroxyvitamin D. N
Engl J Med 305:440-443, 1981.
4. Adams JS, Sharma OP, Gacad MA, et al:
Metabolism of 25-hydroxyvitamin D3 by cultured pulmonary
macrophages in sarcoidosis. J Clin Invest 72:1856-1860, 1983.
5. Selroos OBN: Biochemical markers in
sarcoidosis. Crit Rev Clin Lab Sci 24:185-216, 1986.
6. Nishimua M, Hara A, Nojima H, Mashimo M, Hori
Y. Possible role of the hormonal form of vitamin D3 in the
granuloma-associated angiotensin-converting enzyme activity.
Sarcoidosis 1991 8:101-4.
7. Basile JN, Liel Y, Shary J, et al: Increased
calcium intake does not suppress circulating
1,25-dihydroxyvitamin D in normocalcemic patients with
sarcoidosis. J Clin Invest 91:1396-1398, 1993.
8. Sharma OP. Vitamin D, Calcium, and
Sarcoidosis. Chest 109:535-539, 1996.
9. Costabel U, Teschler H. Biochemical Changes
in Sarcoidosis. Clinics in Chest Medicine 18:827-842, 1997.
Reprinted by permission. Norman T. Soskel, MD
http://www.sarcoidcenter.com
The above questions are taken from Dr. Soskel’s site linking the
online book entitled "Sarcoidosis" by Dr. Sharma.
Ed. Note: A patient should consult with his or her
personal physician before changing or considering any medical
treatments or health related changes.
Back to Table of Contents
8. Known Sarcoid "Facts" Discover just how little is
known about sarcoidosis
Widely Accepted Theories About Sarcoidosis
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Sarcoidosis occurs when the body's immune
system overreacts to an unknown agent.
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Sarcoidosis "masquerades" as diseases, such
as hepatitis, arthritis, tuberculosis and asthma.
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About 50% of patients have some permanent
organ damage from the disease.
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Sarcoidosis is the cause of death in less
than 5% of patients with the disease.
Back to Table of Contents
9. F. Y. I. Sarcoidosis related information and
events
1.) Voters Send Mixed
Messages on Health Initiatives
2.) Study: Treatment of Pulmonary
Sarcoid with Pentoxifylline
Voters send mixed messages on
health initiatives Last Updated: (Reuters Health) By Julie
Rovner
WASHINGTON (Reuters Health) - Voters in three states
approved ballot measures aimed at cracking down on tobacco use, but
three other measures to lower penalties for marijuana use were
defeated. And voters in Oregon overwhelmingly rejected a proposal to
create the nation's first "universal coverage" plan for all state
residents, after opponents spent more than $1 million to defeat it.
Probably the most sweeping health initiative passed
was in Florida, where voters amended the state constitution to ban
smoking in most workplaces, including restaurants. The only
exemptions would be for stand-alone bars, tobacco shops, and
designated hotel guest rooms. The measure garnered more than 70%
support. "This is a huge public health victory for every Floridian
and everyone who visits Florida," said John L. Kirkwood, President
of the American Lung Association.
Voters in Arizona approved an initiative to raise
the tobacco tax to $1.18 per pack, making it one of the nation's
highest. Funds raised would help underwrite the state's trauma
system. And in Montana, voters ordered the state to spend at least
32% of funds from the 1998 settlement with tobacco makers on smoking
cessation and control programs.
In Michigan, however, voters defeated an effort to
direct 90% of the state's settlement funds to research and
healthcare, while in Missouri, an effort to raise tobacco taxes was
trailing narrowly as of Wednesday morning.
Voters were more of one mind when it came to
weakening penalties for possession of marijuana, even for medical
use. Ballot questions in Nevada, Arizona, and Ohio all failed, after
opponents, including the White House, argued they would undermine
the war on illegal drugs.
And voters in Oregon defeated two high-profile
ballot questions. One would have created a "universal healthcare
system" within the state to be run by a government-appointed board.
It went down after opponents, including the health insurance
industry, raised and spent a reported $1.2 million to defeat it.
Voters also rejected a proposal that would have required explicit
labeling of genetically modified food.
Study:Treatment of Pulmonary
Sarcoidosis with Pentoxifylline
Title: Treatment of Pulmonary Sarcoidosis with
Pentoxifylline Number: 99-H-0057 Summary: Sarcoidosis is a
disease most commonly affecting the lungs, but it can also involve
lymph nodes, skin, liver, spleen, eyes, bones, and glands. The cause
of the disease is unknown. When it occurs it can produce an
inflammatory reaction leading to irreversible organ damage and
disability.
In sarcoidosis granulomas can form in various organs
(primarily lung) which can lead to its dysfunction. Granuloma is
formed by clusters of inflammatory cells. The formation of these
granulomas is influenced by the release of a substance called
TNF-alpha (tumor necrosis factor alpha) which is found in some white
blood cells. A drug known as pentoxifylline (POF) is known to
markedly reduce the release of TNF-alpha.
The standard medical treatment for sarcoidosis is
steroid therapy. However, steroid therapy is associated with
significant side effects and often must be stopped. Unfortunately,
some of these patients can relapse when the steroid therapy is
discontinued. Because of this, researchers are interested in finding
alternative therapies for the treatment of sarcoidosis.
This study will evaluate the effectiveness of giving
POF to patients with sarcoidosis currently taking steroids.
Researchers will compare the results between patients taking
steroids with pentoxifylline and those patients taking steroids
alone.
Sponsoring Institute: National Heart, Lung and Blood
Institute (NHLBI)
Recruitment Detail
Type: Active Accrual Of New Subjects
Gender: Male & Female
Referral Letter Required: Yes
Population Exclusion(s): None
Eligibility Criteria:
INCLUSION CRITERIA:
1. Admission to this protocol will require a diagnosis of
pulmonary sarcoidosis with or without ocular sarcoidosis based
on clinical history, and lung or intrathoracic lymph node biopsy
consistent with sarcoidosis with other causes of granuloma ruled
out. Prior to enrollment in the study, patients will have their
biopsy slides reviewed by a pathologist for confirmation of the
diagnosis.
2. Males or females between 18 and 70 years of
age on corticosteroid therapy.
EXCLUSION CRITERIA:
1. Patients with active sarcoidosis of major organs other than
the lungs and eyes (e.g., central nervous system, cardiac,
renal) that require corticosteroid therapy.
2. Patients with uncontrolled hypertension,
uncontrolled diabetes, history of cerebral or retinal
hemorrhage, heart failure (New York class III or higher), renal
failure (on dialysis), liver failure (with portal hypertension
and ascites), cancer EXCEPT non-metastatic basal or squamous
cell carcinoma of the skin, hematologic disorders, including
severe anemia (hemoglobin less than or equal to 7 g/dl),
granulocytopenia, platelet disorders, or a need for
anticoagulation therapy.
3. Patients with abnormalities that
contraindicate or increase the risk for fiberoptic bronchoscopy
and bronchoalveolar lavage, including history of allergy to
lidocaine, atropine or other topical anesthetics or
premedications, FEV(1) less than 0.8 liters, PaO(2) on
supplemental oxygen of less than 70 mm Hg or PaCO(2) greater
than 45 mm Hg, presence of uncorrected clotting disorders,
uncontrolled hypertension, and significant cardiac disease.
4. Patients with concomitant obstructive lung
disease (i.e., asthma, COPD, cystic fibrosis) or other
interstitial lung diseases since changes in pulmonary function
in such patients could not be attributed to sarcoidosis alone.
5. Patients who are pregnant or lactating.
6. Women of child-bearing potential without an
accepted method of birth control.
7. Patients with a positive serum test for human
immunodeficiency virus or hepatitis B or C virus.
8. Patients incapable of giving informed
consent.
9. Patients allergic to POF or methylxanthines
such as caffeine, theophylline and theobromine.
10. Patients currently taking corticosteroids
for disease other than pulmonary sarcoidosis, theophylline, POF,
or other xanthines, or patients who have been on these drugs in
the preceding three months.
Special Instructions: Currently Not Provided
If you are a physician or professional with
experience in the treatment of sarcoidosis or an upcoming event and
would like to write an article for this newsletter please contact us
at
jaysjob@gmail.com
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10.
Take a
break- have a chuckle!
Actual Medical Chart Notes
The following notes are taken from over two dozen
actual patient medical charts:
1. Patient has two teenage children, but no other
abnormalities.
2. Patient has chest pain if she lies on her left
side for over a year.
3. On the second day, the knee was better, and then
on the third day it disappeared.
4. The patient is tearful and crying constantly. She
also appears to be depressed.
5. The patient has been depressed since she began
seeing me in 1993.
6. Discharge status: Alive, but without my
permission.
7. Healthy-appearing decrepit 69-year old male,
mentally alert but forgetful.
8. The patient refused autopsy.
9. The patient has no previous history of suicides.
10. Patient has left white blood cells at another
hospital.
11. Patient's medical history has been remarkably
insignificant with only a 40-pound weight gain in the last three
days.
12. Patient had waffles for breakfast and anorexia
for lunch.
13. Between you and me, we ought to be able to get
this lady pregnant.
14. She is numb from her toes down.
15. While in ER, she was examined, x-rated and sent
home.
16. The skin was moist and dry.
17. Occasional, constant, infrequent headaches.
18. Patient was alert and unresponsive.
19. She stated that she had been constipated for
most of her life until she got a divorce.
20. Rectal examination revealed a normal-size
thyroid.
21. I saw your patient today, who is still under our
car for physical therapy.
22. The lab test indicated abnormal lover function.
23. The patient was to have a bowel resection.
However, he took a job as
a stockbroker instead.
24. Skin: somewhat pale but present.
25. The pelvic exam will be done later on the floor.
26. Patient was seen in consultation by Dr. ____,
who felt we should sit on the
abdomen and I agree.
27. Large brown stool ambulating in the hall.
28. She has no rigors or shaking chills, but her
husband states she was hot in bed last night.
29. Patient was found in bed with her power mower.
Back to Table of Contents
11. Computer Corner Tips for using your computer from
1.) Caps Lock Trick 2.)
Deleting Unwanted Programs
Caps Lock Trick Don't you
hate it when you accidentally hit the Caps Lock key? Sometimes I
have a whole sentence typed in before I realize my mistake! (I know,
GASP!)
What if you could set your computer up so it
alerts you when your pinky finger wanders off and taps the Caps
Lock key? With this tip, I'll show you how to make your computer
beep & flash the next time it happens.
The first thing you'll need to do is get the
computer to beep when you hit the Caps Lock key. Here's how:
1. Click the Start button, Settings, Control Panel
(XP Users, hit the Start button, Control Panel). Open the
Accessibility Options Icon.
2. On the Keyboard tab, click the "Use Toggle Keys"
checkbox.
That's it for the beeping part.
Next, we need to get your screen to flash you,
err, flash at you. Here's how:
1. From the Accessibility Options screen, click the
Sound tab and check the "Use SoundSentry" checkbox.
2. Next click the Settings button and select "Flash
active window" from the "Warning for windowed programs" drop down
box.
That's it. Hit OK until you're clear of property and
settings screens. Open your favorite word processor and hit your
Caps Lock key.
Cool huh?
P.S. If you don't have an Accessibility Options icon
in your Control Panel, you may not have it installed.
To install, hit your Start button, Settings, Control
Panel. Open the Add / Remove programs icon and click the Windows
Setup tab. You'll be able to add components from there. Keep in mind
you'll need your Windows CD!
--Steve
Deleting Unwanted Programs
It seems like I get questions all the time asking how to remove /
uninstall programs. So, here's the step by step procedure:
1. The first thing to do is click the Start menu,
Programs. Then hunt for the program you want to delete. Oftentimes,
you'll find an Uninstall program under it's program group.
2. Another way would be to click the Start button,
Settings, Control Panel. Then open the Add/Remove programs icon.
You'll see a list of programs that Windows can remove from your
system. Just click the one you would like to remove and hit the OK
button.
3. If neither of the above work, you can always go
to the program's folder and delete it. However, there is no
guarantee that the program was confined to that folder. It could
have other files distributed throughout your computer.
4. Finally, you might consider a program like Clean
Sweep. Once installed, it watches which program files go where and
can remove unneeded files for you.
Keep in mind that some of the files that get placed
on your hard drive when you install a program are basically updates
to some of your existing files. So if you are uninstalling something
and get a message saying not all the files from a program could be
removed, it may be due to the fact that other programs also use
these files.
Reprinted by permission from WorldStart.com. To
discover more interesting computer and Internet tips please visit:
WorldStart.com at
http://www.worldstart.com/tips/
Back to Table of Contents
12. From the Doctor's Guide From our friends at
Doctors Guide to The Internet
Inhaled Corticosteroids Do Not Affect Bone Density
MILWAUKEE, WI -- Inhaled corticosteroids do not
decrease bone density in post-menopausal women, according to a study
in the January 2003 Journal of Allergy and Clinical Immunology
(JACI). The JACI is the peer-reviewed scientific journal of the
American Academy of Allergy, Asthma and Immunology (AAAAI).
Corticosteroids are anti-inflammatory medications
frequently used to treat asthma and other respiratory disorders.
Long-term use of corticosteroids in oral form has been linked to
adverse effects, including osteoporosis. In this study, researchers
in Sweden at Lund University and Goteberg University, led by Solve
Elmstahl, MD, PhD, sought to understand if inhaled corticosteroids
also produced a decrease in bone density.
Among the sample group of post-menopausal women, 106
had been using inhaled corticosteroids; 49 had been using oral,
inhaled and intra-articular injections; and 674 had not been using
any form of corticosteroids. Researchers collected health, dietary
and medication information, and performed forearm bone density scans
on the women.
Researchers found no difference in bone density
measurements between the group using inhaled corticosteroids and the
group that had no usage. The study also found no relationship
between inhaled corticosteroid dose levels and bone density further
underscoring the relative safety of this form of corticosteroid. As
suspected, bone density was found to be lower among the women using
oral corticosteroids
Reprinted by permission The Doctors Guide to the
Internet. To find out more interesting medical information please
visit: The Doctors Guide to the Internet at
http://www.pslgroup.com/docguide.htm
Back to Table of Contents
13. Spotlight Site Every issue a new website relating
to sarcoidosis
Atlas of Granulomatous Diseases url address:
http://www.granuloma.homestead.com
webmaster:
Dr. Yale Rosen, M.D.
launched: 2002
purpose of website:
The site is relatively small now but will be expanded significantly. It
presents gross and microscopic images of granulomatous diseases with
a marked emphasis on sarcoidosis. Although the content of this site
is targeted primarily for pathologists and other physicians, some of
the content, especially the gross photographs of lungs and other
sites affected by sarcoidosis, will also be of interest to patients
and others. Thank you. Yale Rosen, M.D.
Do you know of a great site we could spotlight here?
Drop us an email. We'd love
to share it with our readers!
Back to Table of Contents
14. Observations Quips and quotes
...keep looking up...
..."keep your face to the sunshine and you
cannot see the shadow"
-Helen Keller
Back to Table of Contents
15. Read All About It! Literary materials
relating to sarcoidosis
Featured in this issue:
The Official
Patient's Sourcebook on Sarcoidosis
Title: The Official Patient's Sourcebook on Sarcoidosis Author:
James N. Parker M.D. and Philip M. Parker Ph. D. Paperback: 304
pages ; Dimensions (in inches): 0.65 x 10.84 x 8.22 Publisher:
ICON Health Publications; ; (June 2002)
ISBN: 0597831564
List Price: $24.95 Available:
www.amazon.com
or
Online Ebook
From the Publisher This book has been created for
patients who have decided to make education and research an integral
part of the treatment process. Although it also gives information
useful to doctors, caregivers and other health professionals, it
tells patients where and how to look for information covering
virtually all topics related to sarcoidosis (also Besnier-Boeck
disease; Boeck's sarcoid; erythema nodosum; Hilar adenopathy plus
uveitis; Loeffgren's syndrome; sarcoid of Boeck), from the
essentials to the most advanced areas of research.
The sourcebook draws from public, academic,
government, and peer-reviewed research. Selected readings from
various agencies are reproduced to give you some of the latest
official information available to date on sarcoidosis. Given
patients' increasing sophistication in using the Internet,
abundant references to reliable Internet-based resources are
provided throughout this sourcebook. E-book and electronic
versions of this sourcebook are fully interactive with each of
the Internet sites mentioned (clicking on a hyperlink
automatically opens your browser to the site indicated). In
addition to extensive references accessible via the Internet,
chapters include glossaries of technical or uncommon terms.
This is a "must have" reference book for
patients, parents, caregivers, and libraries with medical
collections. It explores basic techniques to researching
sarcoidosis (e.g. finding guidelines on diagnosis, treatments,
and prognosis), including information on how to get in touch
with organizations, associations, or other patient networks
dedicated to sarcoidosis. It also gives you sources of
information that can help you find a doctor in your local area
specializing in treating sarcoidosis.
This book has been created for patients who have
decided to make education and research an integral part of the
treatment process. ... While this sourcebook covers sarcoidosis,
your doctor, research publications, and specialists may refer to
your condition using a variety of terms. Therefore, you should
understand that sarcoidosis is often considered a synonym or a
condition closely related to the following: Besnier-Boeck
disease; Boeck's sarcoid; erythema nodosum; Hilar adenopathy
plus uveitis; Loeffgren's syndrome; sarcoid of Boeck.
Back to Table of Contents
16. Chat Schedules Dates and times for the
sarcoidosis chats on AOL
If you subscribe to America Online please join us at
our weekly AOL sanctioned sarcoidosis support chats! Every week
these chats bring people together in a common cause, to discuss all
aspects of having this disease. While it isn't quite a cure, the
healing that comes from listening and talking to other people in the
same condition as yourself can be wonderful. The chats are held in
public areas and are available to everyone on AOL. Please join us
twice every week:
Sunday 6-7PM ET:
"Health Channel Talk" Chat Room
Join HOST HLTH Bharis to chat with others about sarcoidosis.
NOTE* To help you to the chat site we have included this link but it
will only work if you subscribe to AOL and are using their browser
at this time. Thursday 10-11PM
ET:
"Health Channel Talk" Chat Room
Join HOST HLTH Bharis to chat with others about sarcoidosis.
NOTE* To help you to the chat site we have
included this link but it will only work if you subscribe to AOL
and are using their browser at this time.
"...we try to make every chat informative and
enjoyable for everyone. Whether you are newly diagnosed or have had
sarcoid for some time, there is always something to be learned or
shared with your fellow "sarcoidiens". Hope to see you there!"
your host, Brenda - (Bharris354@aol.com)
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17. Archived Newsletters Previous issues of the
Sarcoid Community News
Archived Newsletters are listed at the top and
bottom of this page. Simply choose the previous month you wish to
view from the links at the top or bottom of the page
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18. Newsletter Subscriptions How to Subscribe or
UN-subscribe to the newsletter
Subscriptions to the Sarcoidosis Community News are
Free*. After subscribing you will receive a reminder each time a new
newsletter is published.
-
To subscribe send your name and e-mail
address to:
BHarris354@aol.com >>Be sure to include the word
SUBSCRIBE as the subject<<
-
To unsubscribe send your name and e-mail
address to:
BHarris354@aol.com >>Be sure to include the word
UN-SUBSCRIBE as the subject<<
*Your ISP connect time charges may apply
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19. Cautions: A caution about newsletter information
The information provided from this web site should
NOT be used as a substitute for seeking professional medical
diagnosis, treatment and care. You should not rely on any
information in text files, messages, bulletin board postings or
articles on these pages to replace consultations with qualified
health professionals.
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20. Visitor Counter
This counter below indicates the total number of visitors to this
page since it's inception February 1, 1998
It does a heart good to know we are not alone!
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Editor's Note
|| Stages of Sarcoidosis || The
Pharmaceutical Front || The Healthy Human ||
Sarcoidosis Awareness || Ask the
Doctor || What's Happening ||
Known Sarcoid Facts ||
F. Y. I.
|| Chuckle! || Computer
Corner || From "The Doctors Guide" ||
Spotlight Site ||
Observations
|| Chat Schedules || Archived
Newsletters || Subscriptions to the Newsletter
||
Cautions ||
Credits
|