The Online Newsletter of the National Sarcoidosis Resource Center
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Online Newsletter of The N.S.R.C.

   

SARCOIDOSIS COMMUNITY NEWS
vol. 7 issue I

-- T A B L E   O F  C O N T E N T S --

  Editor's Notes
  Commentary from the Editor

  1. In This Issue
  Summary of articles in this newsletter

  2. Email bag-Announcements
  Share opinions and critiques of past issues

     2a. Special Section
     The Sarcoidosis Golden Lifesaver Award

  3. Stages of Sarcoidosis
  Describes the four types of pulmonary sarcoid

  4. Pharmaceutical Front
  Medications and their effects

  5. The Healthy Human
  General tips for better health

  6. Sarcoidosis Awareness
  Tips to promote public awareness for sarcoid

  7. Ask the Doctor
  Physician's answers to sarcoid questions

  8. Sarcoid: What is Known?
  Discover how little is known about sarcoidosis

  9. F. Y. I.
  Sarcoidosis related information and events

    10. Chuckle!
  Take a break- have a chuckle!

  11. Computer Corner
  Tips for using your computer

  12. From The Doctors Guide
  From The Doctors Guide to The Internet

  13. Spotlight Site
  A website relating to sarcoidosis

  14. Observations
  Quips and quotes

  15. Read All About It!
  Literary materials relating to sarcoidosis

  16. Chat Schedules
  Dates & times for the AOL sarcoid chats

  17. Archived Newsletters
  Past issues of the Sarcoid Community News

  18. Newsletter Subscriptions
  How to Subscribe or UN-subscribe

  19. Cautions
  A caution about newsletter information

  20. Visitor Counter
  It does a heart good to know we are not alone!

  Credits
  Important credits and copyright information

 

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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!

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1. In This Issue
Summary of articles in this newsletter

  • We start off with our EXPANDED Email Bag- Reader Feedback section. We have included new support groups, doctors and awards.

  • The Pharmaceutical Front  contains an article about a new study helping researchers zero in on a potential treatment for Cushing's syndrome.

  • Our Healthy Human contains two articles:

    • 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.

  • 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.

  • FYI in this issue features two articles.

    • 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.

    • The second focuses on a study involving Pentoxifylline as an alternative therapy to steroids for the treatment of pulmonary sarcoidosis.

    • In the Chuckle, interesting notes taken from over two dozen actual patient medical charts. You need to see it to believe it!

  • 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?

    • 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.

  • 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.

  • 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.

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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.

  • 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

  • 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

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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.

gla3sample.gif (7840 bytes)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 .

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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( ).

  • Stage I or Type I

    • Thoracic lymphadenopathy - normal lung parenchyma

    • (enlarged lymph nodes/glands in the middle part of the chest)

  • Stage II or Type II

    • Hilar and mediastinal lymphadenopathy - abnormal lung parenchyma

    • (enlarged lymph nodes/glands in the middle part of the chest with abnormal lungs on x-ray images as well)

  • Stage III or Type III

    • Abnormal lung parenchyma - no lymphadenopathy

    • (abnormal lungs on x-ray images but no enlarged lymph nodes/glands in the middle part of the chest)

  • Stage IV or Type IV

    • Permanent lung fibrosis

    • (destruction of the lung with damage to upper lobes and strain on the heart - scar tissue formation in the lungs - irreversible lung disease)

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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

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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:

  • **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.

  • **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.

  • **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.

  • **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.

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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.

  1. Write an article in a newspaper or magazine

    • You will be surprised at the response

  2. Appear on your local cable TV station

    • You will find others with sarcoidosis

  3. Participate in or sponsor your own sarcoidosis conference, lecture or health fair

    • You will find students and professionals who are interested in researching this disease

  4. Wear a purple "sarcoidosis awareness" ribbon

    • You will be educating the public at large

  5. Simply talking to others about your disease

    • Through casual conversation you will find others with sarcoid, or someone who knows of another with sarcoidosis

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

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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.

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8. Known Sarcoid "Facts"
Discover just how little is known about sarcoidosis

Widely Accepted Theories About Sarcoidosis

  • Sarcoidosis occurs when the body's immune system overreacts to an unknown agent.

  • Sarcoidosis "masquerades" as diseases, such as hepatitis, arthritis, tuberculosis and asthma.

  • About 50% of patients have some permanent organ damage from the disease.

  • Sarcoidosis is the cause of death in less than 5% of patients with the disease.

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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.

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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/ 

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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 

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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!

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14. Observations
Quips and quotes

...keep looking up...

..."keep your face to the sunshine and you cannot see the shadow"

-Helen Keller

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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.

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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

 

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