Platelet E-News – January 16, 2004


  • Inherited Thrombocytopenia: when a low platelet count does not mean ITP
  • Injured Megakaryocytes in ITP
  • Increased Prevalence of Heart Attacks in Lupus Patients
  • Thrombic Complications in ITP
  • Becoming a Partner in Your Healthcare
  • ITP and Pregnancy: A retrospective analysis


INHERITED THROMBOCYTOPENIA: when a low platelet count does not mean ITP

“Congenital thrombocytopenias, once considered rare and obscure conditions, are today recognized with increasing frequency….”. It is especially important to distinguish low platelets due to inherited genetic abnormalities from ITP. The treatments used for ITP will be ineffective if the cause of low platelets is genetic reports Dr. Jonathan Drachman in his review article in the journal “Blood.”

Many of the congenital thrombocytopenias have platelet abnormalities that can be recognized by a careful review of a blood smear. In adults, congenital thrombocytopenias are usually mild or moderate with platelet counts above 20,000. Factors such as family history, and tendencies toward easy bruising, prolonged bleeding, or petechiae are important considerations in diagnosis.

If congenital thrombocytopenia is suspected, it is important for the patient to see a hematologist who specializes in inherited platelet disorders.

“Inherited thrombocytopenia: when a low platelet count does not mean ITP” by Jonathan G. Drachman, Blood, 15 January 2004, Vol. 103, No. 2
Note that this article contains a long list and description of various inherited thrombocytopenias. See for a partial list.

See also


Megakaryocytes are bone marrow cells that produce platelets and other blood cells. In the past, studies have shown that 30% to 50% of patients with ITP have a reduced rate of platelet production. Now scientists in the Netherlands have found evidence that the reduced platelet production may be associated with injured megakaryocytes. They found that the megakaryocytes of ITP patients had extensive abnormalities. These megakaryocytes were surrounded by neutrophils and macrophages (types of white blood cells) indicating an inflammatory response against the megakaryocytes. The megakaryocytes also displayed characteristic signals that cells display when they are dying. The authors concluded that the release of platelets into circulation was depressed in some cases of active ITP possibly due to the action of autoantibodies against the megakaryocytes.


Patients with systemic lupus erythematosus (SLE) have an increased prevalence of heart attacks according to studies in the New England Journal of Medicine. In one study 40% of lupus patients had atherosclerotic plaques, a precursor of heart problems. This could be due to the chronic activation of the immune system. Possible SLE-related risk factors include systemic inflammation, autoantibodies to endothelium cells that make up the inside of blood vessels, HDL, phospholipids, circulating immune complexes, activated complement products, nephritis (kidney disease), and dyslipidemia (disorders of HDL and LDL metabolism).

“Systemic Lupus Erythematosus and Accelerated Atherosclerosis”, Bevra Hannahs Hahn, MD, NEJM 349:25, December 18, 2003, P. 2379

“Prevalence and Correlates of Accelerated Atherosclerosis in Systemic Lupus Erythematosus


Platelet microparticles, a marker of platelet activation, are often elevated in ITP patients according to Yeon S. Ahn, MD. In his 2002 study of twenty ITP patients who experience cognitive problems, he observed evidence consistent with small vessel disease. He concluded that thrombic complications can occur in ITP. This could lead to gradual memory loss and vascular dementia. The progression was faster in those with splenectomy and higher platelet counts. At the 2003 American Society of Hematology conference he presented research showing that ITP patients who experienced the dementia had plasma that activated the endothelial cells lining the walls of the blood vessels. This could lead to thrombosis and cause small stroke-like reactions in the brain.

ASH Abstract [1052] Plasma from Patients with ITP-Associated Dementia (ITPAD) Activates Endothelial Cells (EC) and Enhances Transendothelial Migration of Leukocytes (TEML). Session Type: Poster Session 164-I

“Vascular dementia in patients with immune thrombocytopenic purpura” J Clin Lab Med 119:334,1992; Throm Res 107:337,2002


“People who become partners in their care and view the receipt and delivery of healthcare as a service wherein they are the consumer and the doctor or clinician is the provider, will feel more in control and will likely have better outcomes than people who assume the more traditional role of ‘patient’.” In the past the physician/patient model was considered one of compliance and patients who found it difficult to follow physician directive were considered non-compliant. Now it is recognized that the more active a role a person takes in deciding their treatment protocol, the more likely that the decisions will be carried out.

“Becoming a partner in your healthcare” R. Paper, RN, Haemophilia (2002), 8, 447-449

ITP AND PREGNANCY: a retrospective analysis

In most studies of ITP and pregnancy, the focus has been on the infant. In a new retrospective study at McMaster University in Hamilton, Ontario, the records of 119 pregnancies over an 11-year period were reviewed. They revealed that for most women, the pregnancies were uneventful. However 21.5% of the women had moderate to severe bleeding. Most deliveries (82%) were vaginal. The authors concluded that “ITP in pregnancy carries a low risk, but mothers and infants may require therapy to raise their platelet counts.”

“A retrospective 11-year analysis of obstetric patients with idiopathic thrombocytopenic purpura” Blood, 15 December 2003, Vol. 102, No. 13.


Platelet E-News – February 16, 2004

This e-newsletter is a monthly publication of The Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a health care professional.


  • Updated Clinical Trials List
  • Farmed Salmon Contains Contaminants
  • The Benefits of Mindfulness
  • Helicobacter Pylori: NYC Results
  • Platelet Production Reduced in ITP
  • Vitamin D and Multiple Sclerosis
  • If you have chronic ITP - did you know you have treatment options (advertisement)
  • Herbal Treatment (advertisement)



We are often asked, “How can I assist with ITP research?” One way is to participate in a clinical trial.

We have several major clinical trials listed on our clinical trials page ( that are open for enrollment. They include:

AMG 531- Part B of "An Open-label, Dose-finding Study Evaluating the Safety and Efficacy of Amgen Megakaryopoiesis Protein 2 in Thrombocytopenic Subjects With Immune Thrombocytopenic Purpura" is now enrolling patients. There will be 10 study sites participating. For more information and to find a study site near you see
Preliminary results from Part A of this study have been promising. See and place "AMG 531" in the search box to view the abstract from the 2003 American Society of Hematology meeting.
Rituximab in Children - The purpose of this study is to formally evaluate the safety and effectiveness of Rituximab in children and adolescents with severe or refractory ITP. For general information and a reference for parents, see

More specific inquiries (from MDs) may be addressed to Pamela Boardman, Study Coordinator, Children's Hospital Boston 617-355-2901;

Daclizumab - Hematologists are testing a new monoclonal antibody treatment (Daclizumab) for people with ITP. The study may help increase platelet counts, reduce bleeding symptoms, and reduce or discontinue immunosuppressive medications. The study takes place at the NIH Clinical Center in Bethesda, Maryland, right outside of Washington, DC. Please call for more information: (301) 496-515. See:;jsessionid=C732EB24588

Enbrel - "Prospective Trial of Etanercept (Enbrel) in the Treatment of Chronic Immune Thrombocytopenic Purpura (ITP) in Children and Adults". This a pilot study of a commonly used arthritis drug that may help people with chronic ITP. Study sites include Comprehensive Bleeding Disorders Center, Peoria, IL and Children's Hospital of Orange County, Orange, CA. The treatment phase of the study will last twelve weeks, the observation phase for 6 months. For further information Dr. Michael Tarantino at or call 309-692-4533.


Compared with wild salmon, salmon farmed in Europe and North America has significantly more contamination with polychlorinated biphenyls (PCB’s) and 13 other organic chemicals report researchers at Indiana University. The researchers recommend limiting consumption to no more than one serving per month. Farmed salmon now accounts for the majority of salmon available in supermarkets. More than 1 billion kilograms are farmed each year worldwide.

Science News January 24, 2004, Vol 165

(Note: Many pollutants have been shown to exacerbate or potentially cause autoimmune diseases see:


“The ability to pay attention to what you’re experiencing from moment to moment- without drifting into thoughts of the past or the future, or getting caught up in the opinions of what is going on- is called mindfulness” According to the “Harvard Women’s Health Watch” cultivating mindfulness can expand your capacity to cope with illness and possibly improve your health. One form of mindfulness practice is called mindfulness meditation. This type of meditation is the subject on several books and classes.

Harvard Women’s Health Watch, Vol. 11, No. 6, Feb. 2004

See also:


Researchers at the Weill Medical Center of Cornell University in New York City tested 74 patients with ITP. They found H pylori infection in 16 of the patients. They eradicated H pylori in 15 of the 16 patients. As a result of the treatment for H pylori, the platelet count increased in only one of them. These results conflict with previously published results from other countries showing a positive platelet response in a larger percent of H pylori infected ITP patients when the H pylori is treated successfully. The authors hypothesized several reasons for this discrepancy including variations in the patients’ immune system, different strains of H pylori, and different anti-bodies associated with the H pylori infection. Future studies should be large, randomized and track other parameters that could be important determinants in response.

Marc Michel et al, Blood, 1 February 2004, Vol.103, No. 3


In a comparison of blood from healthy donors and ITP patients, blood from 12 of 18 ITP patients showed a significant decrease in megakaryocyte production. (Megakaryocytes are cells in your bone marrow that produce platelets) In this test tube experiment, researchers from the Scripps Research Institute found that blood from ITP patients showed a decrease in the total numbers of megakaryocytes produced during the incubation period. They also found an impairment in megakaryocyte maturation resulting in reduced platelet production per megakaryocyte. These results are most likely due to ITP antibodies. The author’s suggest a similar effect may occur in the bodies of ITP patients.

Blood, 15 February 2004, Vol 103, No. 4


Women who consume little vitamin D develop multiple sclerosis (MS) at a rate about 50 percent higher than those who consume a high amount of the nutrient. Researchers from the Harvard School of Public Health analyzed the vitamin D intake from diet and multivitamins in 187,563 women. Of these, 173 developed MS. About 50% more of these women were in the least vitamin D intake group compared with the highest intake group. Previous studies found that many MS patients are deficient in vitamin D. It is not known whether vitamin D deficiency precedes the onset of MS or is the result of the disease. MS is more prevalent far from the equator where less of the sun’s ultraviolet light is available for people’s bodies to make vitamin D.

Science News January 31, 2004, Vol 165

Note: In our May 28, 2002 version of our e-news we reported “Researchers studying autoimmune liver disease report that Vitamin D appears to be an immune system modulator.”

Several people with ITP mentioned to us that they felt better when they spent some time in the sun. If you feel that sunlight has an effect on your ITP (positive or negative), please write to


Platelet E-News – March 16, 2004

This e-newsletter is a monthly publication of The Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a health care professional.


  • Inflammation and Autoimmunity
  • The Problem with Multi-tasking
  • IVIg in the News
  • Using Homeopathy to Treat Toxic Exposure
  • The Expanded Role of Platelets
  • Clinical Trial Correction
  • Results from our Sunshine Poll
  • Immune Globulin Services Provided in Patients’ Homes (advertisement)
  • Herbal Treatment (advertisement)
  • Is Maintenance Therapy the Choice for You (advertisement)



Inflammation, your body’s response to infection, is increasingly linked to various diseases. It has been found to play a role in heart attacks, strokes, diabetes, Alzheimer’s disease, cancer, and autoimmune diseases. Remicide and Enbrel, drugs used to treat some autoimmune diseases, target specific inflammatory cytokines. In addition to taking drugs or supplements, you can reduce the amount of inflammation in your body by exercising, eating a diet low in fat and high in fruits and vegetables, and flossing your teeth.

“The Fires Within” by Christine Gorman and Alice Park, TIME, February 23, 2004

(An ITP clinical trial for Enbrel is in progress. See


Multi-tasking, doing too many things in too little time, elevates your cortisol levels, a hormone produced in your adrenal gland. Continued elevation of cortisol can lead to a weakened immune system and deplete other hormones. Dan Beskind, MD, concludes, “Most of us harbor a nagging belief that a slower life is a luxury we can’t afford. Our bodies tell us otherwise. Slowing down is essential to our health.”

“Juggler’s Syndrome: Multitasking isn’t just stressing us out – it’s endangering our health by Dan Beskind, MD, Utne Reaer, March-April 2004


Gamunex ® , a type of IVIg manufactured by Bayer HealthCare, has received approval from Germany’s regulatory authority for biological products. This follows its approval in the United States and Canada. Bayer HealthCare has also received FDA approval for an in-house nucleic acid test for the HIV virus in plasma donations.

News release from Bayer HealthCare. See


Mice treated with Arsenicum Album, a homeopathic remedy, reduced the liver toxicity induced by arsenic poisoning reported researchers in West Bengal, India. Arsenic tainted groundwater is a large problem in India and other countries. Homeopathy, a healing practice used for more than 200 years, treats illness with a minute dilution of the substance believed to cause the disease. In forty other studies that used homeopathic treatments to address toxic exposure, 27 showed positive results.

“Toxic Busters?” by Craig Cox, Utne Reader, March – April, 2004

(Environmental toxins have been shown to exacerbate or potentially trigger autoimmune diseases. Dr. Noel Rose will speak on the subject at our upcoming ITP Conference 2004


“Platelets…regulate inflammation, tissue repair, and immune responses” report researchers Andrew Weyrich and Guy Zimmerman of the University of Utah. These comments in the March 15 issue of the journal Blood, were in response to two articles on platelets in that issue that dramatically expanded what is known about the proteins produced by platelets as they go about their work. Researchers at the Royal College of Surgeons identified more than 300 proteins that are released by platelets, only 37% of which were previously known. Understanding the proteins produced by platelets could lead to new diagnostic tools and therapies for thrombotic diseases.

“Propelling the Platelet Proteome” by Andrew Weyrich and Guy Zimmerman, Blood, 15 March 2004, Vol. 103, No. 6

“Characterization of the proteins released from activated platelets leads to localization of novel platelets proteins in human atherosclerotic lesions” Judith A. Coppinger, et al. Blood, 15 March 2004, Vol.103, No. 6


(While this research is directed toward understanding atherosclerosis, it could be useful to those who have few platelets. People with ITP are not protected from getting heart disease, clotting problems, and strokes)


In our February e-news we mentioned a clinical trail using AMG531. The correct name for the trial is "A Dose finding Study Evaluating the Safety and Efficacy of Amgen Megakaryopoiesis Protein 2 [AMP2(AMG 531)] in Thrombocytopenic Subjects with Immune Thrombocytopenic Purpura (ITP)" We apologize for the error.

All of the sites for this clinical trial are now listed at Search on “ITP”.


In the last issue of our e-news we included an article linking the lack of vitamin D with multiple sclerosis. Since your body synthesizes vitamin D in the presence of sunlight we asked our readers to send an e-mail if they found that sunlight effected their health and platelets.

We received six responses. One person reported their bruising symptoms increased with exposure to the sun. The remaining five responses reported an overwhelmingly positive effect of sunlight on their health.


Platelet E-News – April 17, 2004


  • Effect of anti-CD154 on ITP
  • Questioning the role of positive thinking
  • Viagra and other cGMP stimulators interfere with platelet function
  • Diesel fumes suppress immune response
  • Several autoimmune diseases share one bad actor
  • IVIG Preparations not created equal
  • Will WinRho SDF® give you a fast, long-lasting response? (advertisement)
  • Herbal Treatment (advertisement)



Researchers in Japan treated twenty ITP patients with escalating doses of an experimental monoclonal antibody that blocks the CD40/CD154 signal. An increase in platelets was seen in three of the five subjects who received 10 mg/kg, the largest dose tested. CD40 on the antigen-presenting cells triggers CD154 (also known as CD40 ligand) on T-cells. Blocking the interaction between these cells is thought to interfere with the antibody production that takes place in autoimmune diseases. This compound is currently being used in clinical studies for various autoimmune diseases. Further studies are necessary to confirm the benefit of anti-CD154 in ITP patients.

“Effect of a single injection of humanized anti-CD154 monoclonal antibody on the platelet-specific autoimmune response in patients with immune thromocytopenic purpura” Blood, 15 February, 2004 Vol 104, No. 4


Encouraging positive thinking when the patient is a natural grouch can lead to unhealthy stress and a decrease in healing response reports Jimmie Holland at Memorial Sloan-Kettering. Patients who stay with their natural coping style rather that striving for a happy disposition have lower cortisol rhythms and natural killer cell counts, measures of stress and immune response.

“Fighting Cancer with a Frown:Research Questions Role of Optimism in Beating the Disease;’the Tyrrany of Positive Thinking’” A.D. Marcus, Wall Street Journal April 6, 2004


Drugs such as Viagra and other less common compounds increase cGMP, a chemical messenger that causes smooth muscles to relax and also interferes with the action of platelets. The new findings revise previous research that suggested increased cGMP lead to increased blood clots.

“Does cGMP mediate platelet inhibition or stimulation?” Wolfgang Siess,Blood, 1 April 2004, Vol. 103, No. 7, p. 2435


Lower levels of exposure to soot particles from diesel exhaust over time reduce the immune system’s capacity to fend off infection more than the same exposure concentrated at one time. A follow-up study by Joseph K. H. Ma of West Virginia University and his colleagues exposed rats to the same level of diesel-derived particles as administered in earlier work but spread the exposure over 5 consecutive days. In this extended exposure, more bacteria survived in the lungs of diesel-exposed animals than in rats that breathed clean air.

“Diesel fumes suppress immune response” Science News, March 13, 2004, p. 174.


Psoriasis, rheumatoid arthritis, and lupus, three distinct diseases, may share the irregular behavior of the same molecule. Three different research efforts have recently reported that these three different disorders seem to be controlled by the same protein, RUNX1 or runt-related transcription factor 1. This work may not quickly lead to new treatments but it does mean that research efforts that have been loosely connected can now converge on a common molecular target.

B. Harder, “All Roads Lead To RUNX”, Science News, April 3, 2004, p216-217.


IVIG (IGIV, Gammaglobulin, IgG) infusions have a long and successful history in treating a wide variety of illnesses including ITP. However there are small but significant differences in the preparations from different manufacturers that can make a difference in the product’s safety and the likelihood of adverse effects. The best way to minimize adverse reactions is to match product characteristics such as osmolarity, sodium content, sugar content, IgA content and pH, among others, with patient profiles. Osmolarity (associated with thrombotic complications) and sodium content have implications for patients with CHF, renal dysfunction, neonates, the elderly, and patients with hypertension and vascular disease. The sucrose in sugar containing preparations has been associated with renal failure.

R. Sacher, “Not all IGIV Preparations Are Created Equal”, Hem/Onc Today, March 2004, pp. 5ff.


Platelet E-News – May 17, 2004


  • New side-effects reported for three therapies used to treat ITP
  • HHS directs hospitals to discount to uninsured patients
  • Genes linked to chronic ITP in adults
  • Back to basics – Washing hands to prevent illness
  • Snake bite can cause low platelets
  • Embryonic stem cells: future approach to treatment?
  • New test to identify MDS
  • Herbal Treatment (advertisement)
  • How much time does your intravenous (IV) therapy take? (advertisement)
  • Immune Globulin Services Provided in Patients’ Homes (advertisement)



Chemotherapy and cognitive decline: Chemotherapy patients have long complained that the treatment caused cognitive decline. Imaging studies, presented last month at a scientific meeting in Florida, confirmed these complaints by showing marked differences in breast-cancer patients who had undergone chemotherapy compared to a group who had undergone surgery alone. While two-thirds of women treated with chemotherapy show some level of cognitive problems, most recover within weeks or months of treatment. Tim Ahles, at the Dartmouth Medical School, says 20% to 25% of patients may develop lasting problems. “For patients who need chemo, the problems are not significant enough to turn down treatment. But doctors say patients who are borderline candidates may want to factor the potential cognitive side effects when deciding whether to undergo chemotherapy.”

Wall Street Journal, Tara Parker-Pope, March 6, 2004, p D1. e-mail the author at

Steroid therapy as a risk factor for sigmoid diverticular abscess perforation (SDAP): Reuters Health Information Service reported recently on work done by Dr. S. Mpofu and colleagues that showed steroid therapy was strongly associated with the bowel condition while non-steroidal anti-inflammatory drugs were only weakly associated with SDAP. Corticosteroid is a risk factor for SDAP for patients with our without rheumatic disease.

Ann Rheum Dis 2004;63:588-590.

Immunoglobulin-secreting cells (ISC) persist in the spleen: Work by Julia I. Ellyard and colleagues has demonstrated the persistence of long-lived immunoglobulin-secreting cells (ISC) in lymph tissue and rodent spleens. To date, ISC were thought to reside only in the bone marrow. These findings suggest that the spleen may play an important role in maintaining humoral immunity (immunity conferred by antibodies). Identifying the human counterpart of rodent ISC will be valuable in investigating the long-term immunity of splenectomized patients.

BLOOD, 15 May 2003, Vol 103, Num10, pp3805-3812.


Historically hospitals have told uninsured patients that Medicare requires charging them at the highest rate. The Department of Health and Human Services (HHS) has now notified hospitals that there are no federal rules preventing them from offering discounts to uninsured patients. This is important, good news for the 43 million Americans without health insurance.

NORD, March 2004, p6.


Work by Takashi Satoh and colleagues examined the single nucleotide polymorphisms (SNPs) of inflammatory cytokine genes in 84 adult Japanese patients with ITP. They found that TNF-B (+252) G/G phenotype was significantly higher in ITP patients than in healthy controls. Their findings suggest that the SNP located at TNF-B (+252) contributes to the susceptibility of chronic ITP. “Other genetic and environmental factors are definitely necessary for the development of ITP as well, but the SNP at TNF-B (+252) may play a role in an individual’s susceptibility to this disease by promoting the specific autoantibody response.” The authors did not rule out the possibility that the “observed associations merely reflect linkage disequilibrium with other susceptibility genes.”

British Journal of Haematology, 124, 796-801.


It is well understood that hospitals are great places to pick up infections. Christine Gorman reported in Time last month that hospital infections contribute to nearly 90,000 deaths in the US each year. This in the face of a number of studies that show hospital staffs generally follow hand-washing guidelines less than 40% of the time. Many suggestions have been offered. Some hygiene experts have suggested that patients ask doctors and nurses whether they have washed their hands. But the question becomes how to do this without putting the caregiver on the defensive? Dr. Carolyn Clancy, director of the Agency for Healthcare Research and Quality, suggests one way “might be to say, ‘I’ve read that it’s important for health care professionals to wash their hands frequently and that doctors are so busy they sometimes forget.’” Say it with a smile.

Christine Gorman, TIME, March 29, 2004, p. 81.


A 38 year old male patient experienced a timber rattlesnake bite and went to the emergency room within one hour of the bite. Within three days his platelet count dropped to 590 per cubic millimeter. The patient continued to experience thrombocytopenia despite large quantities of CroFab antivenom. Timber rattlesnake bites commonly cause thrombocytopenia. This case suggests that the established treatment for rattlesnake bite may not be sufficient to correct the venom-induced thrombocytopenia.


Researchers at the Graduate School of Biomedical Sciences, Hiroshima University have demonstrated the development of functional platelets from murine (mouse) embryonic stem cells. They suggest that embryonic stem cell derived platelets could be a substitute for platelet transfusions. They suggest their work “should facilitate functional studies using gene-transferred platelets and be a future approach for treatment of platelet disorders.”

Tetsuro-Takahiro, et. al., Production of Functional Platelets by Differentiated Embryonic Stem (ES) Cells in Vitro, BLOOD, 1 December 2003, volume 102, number 12, pp4044-4051.


Investigators at the Pacific Northwest Research Institute (PNRI) in collaboration with researchers at Johns Hopkins University have developed statistical models that identify patients with MDS, or those at a high risk for the disease. Donald C. Malins, PhD, DSc, director of biochemical oncology at the PNRI, said, “the DNA test for MDS is highly predictive …. and is the first molecular marker capable of distinguishing MDS patients as a group from patients with nonmalignant bone marrow disorders.”

John Watson, Hem/Onc Today, May 2004.

(These new tests are important in the diagnosis of ITP because ITP can be confused with MDS and the treatments for the two diseases are very different. Since ITP is a diagnosis of exclusion, these tests are potentially beneficial for both MDS and ITP patients)


Platelet E-News – June 16, 2004


  • ITP Medical Emergency Card
  • Too Much Dieting Harms Immune System
  • Cox-2 Drugs Linked to Stomach Bleeding
  • Platelet Antibody Tests Help Predict Chronic ITP
  • Treatment of Childhood ITP
  • Complementary and Alternative Medicine Use on the Rise
  • Would you like to postpone or avoid splenectomy (advertisement)
  • Herbal Treatment (advertisement)



The Platelet Disorder Support Association has printed a wallet-size medical emergency card designed for patients with ITP. It contains a space for personal, emergency contact, treatment, medical history and insurance information. To receive your medical emergency card, send a note and a stamped, self-addressed envelope to PDSA, P.O. Box 61533, Potomac, MD 20859.

We thank Nabi Biopharmaceuticals for sponsoring the printing of these cards and Morbus-Werlhof-Selbsthilfegruppe, the German ITP Association, for sharing their emergency card format.


Want to keep your immune system in tip-top disease-fighting shape? If you’re a woman, a new study suggests that immune health is best when your weight is stable but can be compromised by yo-yo dieting (repeatedly losing and regaining weight). Researchers at the Fred Hutchinson Cancer Research Center in Seattle interviewed a group of older women about their weight loss history over the past 20 years and theorized that healthy immune function declines with repeated weight loss (and gain). Women whose weight remained stable or those who had lost excess pounds and then maintained a constant weight had better natural killer-cell activity. (Killer cells are important in destroying viruses, detecting leukemia cells, and performing other cellular defenses.) The women who said they had lost and regained weight more than five times had natural killer-cell function approximately one-third lower than that of women whose weight remained stable. The results suggest that for the sake of your immune system you should get to a healthy weight and maintain it.

The study was published in the June 1, 2004, issue of the Journal of the American Dietetic Association


A new Canadian study links Cox-2 inhibitors (pain-relief drug) to increased risk of stomach bleeding. Last year a study published in the American Heart Journal (October 2003) raised the question of whether the Cox-2 inhibitors were safe to use in patients at risk for cardiovascular events. These drugs were thought to be gentler on the stomach but responsible for making platelets “stickier” and more likely to be responsible for clot formation in blood vessels. Now a retrospective Canadian study of health care data for elderly people suggests that the increase use of Cox-2 inhibitors and gastrointestinal bleeding are directly related. The study published in the British Medical Journal followed the observation that when the Ontario government began paying for the new generation of anti-inflammatory drugs, hospital admissions for stomach bleeding rose. Critics of the study point out that the data does not necessarily link the increased bleeding to patients taking the new drugs and that the new safer medications may have brought higher risk patients to use them. The study is in no way conclusive. More definitive conclusions await a large, prospective randomized trial.

Scott Hensley, Wall Street Journal, June 11, 2004, pB-1


Antibody testing has never proved useful as either a diagnostic tool or a predictor for ITP patients. However research reviewed by Douglas Cines, MD, in a recent issue of Blood raises the “possibility that measuring platelet-specific antibodies may be of use to prognosticate the clinical course in patients with an established diagnosis.” Several recent studies support this position and a large recently published study by McMillan and colleagues showed that “once patients with non-immune causes of thrombocytopenia who responded to ITP-directed therapy are excluded, the specificity of a positive antibody assay for the diagnosis of ITP approached 95%.” And finally, the study by Fabris and colleagues appearing in Blood in June of this year followed fifty consecutive patients and using a solid-phase modified antigen capture ELIAS test for the detection of specific platelet-associated autoantibodies against a number of glycoproteins demonstrated that “ITP patients with platelet autoantibodies ….. have a clinical worsening of thrombocytopenia more frequently and sooner that patients without autoantibodies.

Douglas Cines, “Antibodies Redux” Blood, June 15, 2004, p 4380.
Fabrizio Fabris and colleagues, “Platelet-associated autoantibodies as detected by a solid-phase modified antigen capture ELISA test (MACE) are a useful prognostic factor in idiopathic thrombocytopenic purpura” Blood, June 15, 2004, p 4562.



“I believe that doctors often make matters worse in the way they manage this condition (ITP in children). They prescribe mostly unpleasant, frequently unnecessary and sometimes dangerous therapy. They also offer self-defensive and over-cautious advice on risk management, creating what amounts to an anxiety state in some patients,” says Dr. John Lilleyman in a note in a recent issue of the British Journal of Haematology. So often it is platelet count that is treated and the author points out that platelet count is a poor predictor of morbidity (life threatening condition). Turning to mortality he points out that, intracranial haemorrhage is effectively the only fatal complication, but even massive cerebral bleeds can be managed successfully with appropriate emergency measures and are by no means always fatal. Dr. Lilleyman concludes, “Outside the context of emergency treatment for life threatening bleeding … the effect of therapy on the mortality of childhood ITP remains to be determined but is probably close to zero. For morbidity, some measures, …. might improve the quality of life for the occasional child with chronic symptomatic thrombocytopenia by relieving disabling menorrhagia or self-consciousness, or by removing the straitjacket of fear. But heroic attempts to raise the
platelet count in otherwise well children seldom justify the risks involved.”

British Journal of Haematology, 2003, 123, 586-589


Complementary and alternative medicine (CAM) use among Americans is on the rise. Seventy-five percent of adults 18 and over have used CAM, 62% during the past 12 months, when prayer specifically for health reasons was included in the definition. The data supporting the report is from the 2002 National Health Interview Survey (NHIS) conducted by the Centers for Disease Control and Prevention’s (CDC) National Center for Health Statistics (NCHS). This level of use when compared with CAM use reported in earlier studies indicates, according to the report released by the U.S. Department of Health and Human Services, a substantial increase in CAM use during the 1990’s. The report attributes the increase to “marketing forces, availability of information on the Internet, the desire of patients to be actively involved with medical decision making, and dissatisfaction with conventional (western) medicine.” This dissatisfaction the report attributes to the inability of conventional medicine to adequately treat many chronic diseases. The report points out several characteristics these therapies have in common; including “the use of complex interventions; often involving the administration of many medications or medical substances at the same time; individualized diagnosis and treatment of patients; an emphasis on maximizing the body’s inherent healing ability; and treatment of the ‘whole’ person by addressing their physical, mental, and spiritual attributes rather that focusing on a specific pathogenic process as emphasized in conventional medicine.” The report also warns that use of these CAM therapies might have unanticipated negative consequences. Other studies have found that many patients do not share with treating physicians their use of CAM therapies; thus raising the possibility of negative consequences.

“Complementary and Alternative Medicine Use Among Adults: United States, 2002”, Patrick M. Barnes, et. al. The full report is available at

(For more information on the use of CAM for ITP see the results of our PDSA 2001 survey of non-traditional therapies see and


Platelet E-News – July 16, 2004


  • The Ketogenic (Very Low Carb) Diet and Bruising
  • Study Confirms Watch and Wait Treating ITP in Children
  • Clinical Trials in the News
  • Mixing Drugs and Herbs Not Always Safe
  • Supreme Court Weakens Texas Health Care Liability Act
  • Risk Of Rheumatoid Arthritis May Be Reduced With Diet Rich In Vitamin C
  • MS Associated Fatigue Reduced With Yoga or Exercise
  • Small Recording Device May Make Kids Safer



A significant increase in bruising or other minor bleeding has been reported in patients treated with the ketogenic diet; a high fat low carbohydrate diet used to control epilepsy. Dr. Berry-Kravis and colleagues used chart review and prospective screening of 51 past and current diet treated patients for symptoms of bruising and bleeding. They report 16 of the 51 patients experienced bruising or minor bleeding symptoms. The researchers suggest that “Patients on the diet undergoing anticoagulation or surgery be evaluated carefully for symptoms of bleeding tendency.”

“Bruising and the ketogenic diet: evidence for diet-induced changes in platelet function” Berry-Kravis E et al. Ann Neurol. 2001 Jan;49 (1)98-103
PMID: 11198302 [PubMed – indexed for MEDLINE]

(The Atkins diet and other very low carbohydrate diets produce a ketogenic state in the body. PDSA does not recommend these diets. See diet results from our survey at You can view our diet suggestions at


A group of 34 patients diagnosed with ITP at age 6 months to 15 years were seen over a period of almost 8 years by Dr Kenneth Charles and colleagues at Eric Williams’ Medical Sciences Complex on the island of Trinidad. Sixteen patients (47%) were managed by observation alone. Five of these patients (14.7%) were discharged from the emergency room and followed as out patients the others were admitted to hospital. All patients managed by observation alone recovered fully. They report “that non-intervention was safe, cost-effective, and acceptable to both children and parents in the <10 years of age group. However, adolescents were more likely to require treatment.” One patient experienced an intracranial haemorrhage and was treated with IVIg. Three of four adolescent girls tested positive for antinuclear antibodies and developed chronic ITP. Dr Lilleyman of the NHS National Patient Safety Agency in London, UK, responded to the correspondence from Trinidad by saying, “the message from this small cohort study is clear; doing more of nothing produces little difference in outcome apart from less time in hospital and less invasive investigations.”

“Medical nemesis and childhood idiopathic thrombocytopenic purpura” British Journal of Haematology, 126: 282-283, 2004.


The call for more comprehensive disclosure of the start and outcome of clinical trials is growing. The New York Times reported last month that the leading medical journals are considering a proposal that would require drug companies to disclose trials that shed unfavorable light on their products. Editors at a number of journals declined to discuss the matter but confirmed that the Times report was accurate.

The Washington Post reported earlier this month that the World Health Organization (WHO) wants to start an international registry of clinical trials or drug trials. Full disclosure has been gaining momentum following a recent report that drug companies had not published the results of tests of antidepressant drugs that showed they were ineffective in treating children.

The underreporting is significant. In 2002 the FDA found that only 48% of trials for cancer drugs were registered. The Washington Post reports that a review now indicates that the listing rate for drugs for some other serious diseases may be in the single digits. A 1997 federal law requires drug manufacturers to register clinical trials with the FDA. But the law is not enforced because the statute did not spell out penalties or explicitly give the FDA authority to crack down on violators. Senator Kennedy, who helped create the registry in 1997, plans to seek enforcement provisions.

There are a number of important issues. The drug companies are concerned that more fully complying with registering trials could endanger trade secrets. Critics, on the other hand, hold that the drug manufacturers want to prevent all the evidence from emerging because it could have a negative impact on sales and profits. These issues become all the more important with the turn to evidence based practice and evidence based reimbursement. The evidence based approach will be difficult to justify in an environment where the evidence is so selectively made available by those with an important financial stake in the process.

Shankar Vedantam, “Drugmakers Prefer Silence on Test Data”, Washington Post, July 6, 2004, p A1

S. Vedantam, “WHO Wants to Start Drug Trial Registry” Washington Post July 8, 2004, p A3

“Medical Journals May Force Disclosure of Bad Trials” Reuters Health Information as reported on Medscape, June 23, 2004.


Evidence is accumulating that some herbs and food additives when taken along with certain prescription drugs may weaken the effects of the prescription drugs or increase the risk of undesirable side effects. Some examples are garlic intensifying the effects of blood-thinning drugs and echinacea increasing the risk of side effects with some medications. The FDA is funding a study of the effects of Echinacea on birth control regimens. Calcium fortified orange juice and Total cereal may weaken the effects of antibiotics such as Cipro, Noroxin, and tetracycline. Some drug companies are listing herbal interactions on their labels and some herbal companies are printing potential drug interactions on their labels. The available evidence would call for patients to list all herbs and food additives with their physicians when providing medical histories or medications they are using.

Jane Spencer, “The Risks of Mixing Drugs and Herbs, Wall Street Journal, June 22, 2004


The U.S. Supreme Court ruled unanimously last month that patients can not sue their health insurance carrier in state court; federal courts are their only recourse. The cases ruled on were brought under the 1997 Texas Health Care Liability Act alleging that decisions to deny care were medical, not administrative, and covered by the 1997 Texas law. The court held otherwise. This ruling weakens the Texas law as well as similar laws in other states that have been enacted to give patients the option to sue (in state courts) insurance company decision makers for malpractice damages instead of being limited by the federal law of suing for the cost of the denied treatment.

Health Assistance Partnership, Weekly Email, June 21, 2004.


A report this month on the findings from a population-based study of more than 20,000 initially arthritis-free subjects suggests foods high in vitamin C may protect against inflammatory polyarthritis (IP) a rheumatoid arthritis involving two or more joints. Dr. Dorothy Pattison and colleagues found that those reporting low intake of fruits, vegetables, and vitamin C, less than 55.7 mg/day, were 3.3 times more likely to develop IP than the control group who consumed vitamin C at a rate of more than 94.9 mg/day. The findings from this study at the University of Manchester, UK contrast with a recent report based on work using a guinea pig model of osteoarthritis that linked high doses of vitamin C with increased severity of the disease. The researchers pointed out that comparing the results from observational studies with those conducted in a laboratory setting is difficult. Also these contrasting results may suggest different disease mechanisms.

“Vitamin C Rich Diet May Cut Rheumatoid Arthritis Risk”, Annals of the Rheumatic Diseases, 2004; 63:843-847, WebMD Medscape, Reuters Health Information.


A recent randomized clinical trial found that yoga or exercise “produced improvement in secondary measures of fatigue, including the Energy and Fatigue (Vitality) score on the Short Form (SF)-36 health related quality of life, and general fatigue on the Multi-Dimensional Fatigue Inventory (MFI).” Dr Barry Oken and colleagues at the University of Portland randomly assigned 69 subjects with clinically definite MS to one of three groups. One group attended a weekly yoga class and supplemented this with home practice. The second group did weekly exercise class using a stationary bicycle along with home exercise and the third group was a wait-listed control. While there were no clear changes in mood related to yoga or exercise, there is a possibility that mood improvements contributed to the observed improvements in quality of life and fatigue.

Laura Barclay, MD, “Yoga, Exercise Improve Fatigue Associated with Multiple Sclerosis”, Neurology, June 8, 2004, vol 62, pp2058-2064; and Medscape Medical News.


The availability of the SOS Philips In-Touch Address Recorder was reported recently in Time magazine. The device is available for $20.00 and records up to a 20 second message. The message can include medical information and attaches to a child’s clothing. The recording button is recessed and reasonably tamper proof. Details can be found at, search on In-Touch Address Rercorder.

“A Recording to Help Keep Your Kid Safe”, Time magazine.


Platelet E-News – August 16, 2004

This e-newsletter is a monthly publication of The Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a health care professional.


  • Splenectomy: The Long Run
  • Disclosing New Data for Medications and Treatments
  • Hemophilia Drug Lowers Risk of Death for Bleeding Stroke
  • Splenectomized Patients at Greater Risk of Contracting Babesiosis
  • Scar Prevention Polymers May Help Those with Inflammatory Conditions
  • Take Charge of Your Care: Some Suggestions



Two recent articles in the journal “Blood” address several long term aspects of splenectomy outcome for ITP. The first article examines the outcome for ITP patients refractory to splenectomy. The second addresses three questions: How durable are the responses to splenectomy? Is it possible to predict who will respond to splenectomy? What is the frequency of surgical complications with splenectomy as a treatment for ITP?

The first article by Robert McMillan and Carol Durette reports on long-term follow-up of 105 patients who failed splenectomy and required additional therapy. Seventy-five of these patients attained a stable partial (platelet count 30,000/mm3) or complete (normal platelet count) remission. Of these 75 patients, 51 maintained their remission after stopping therapy while 24 required continued treatment. Thirty of the 105 patients in the study remained unresponsive to treatment. Thirty-one of the 105 patients died 17 due to ITP (11 – bleeding, 6 – therapy complications) and 14 of unrelated causes. Five of these deaths were from the group of 51 who maintained remission after stopping therapy, 8 from the group of 24 who achieved remission but required continued treatment, and 18 from the 30 patients who remained unresponsive to treatments. The authors conclude “that most refractory ITP patients attain a stable remission although, on average, this occurs slowly. However, a subpopulation with severe, resistant disease has significant morbidity and mortality.”

McMillan, Robert and Durette, Carol, “The Long Term Outcome of Adult Chronic ITP Patients Who Fail Splenectomy,” Blood, August 2004, 104:956-960.

The second article by James George and colleagues poses three very important questions regarding the durability, predictability, and complications associated with splenectomy. The study reviewed 135 case series reporting over 6,000 splenectomized ITP patients. They report a complete response in 1731 of 2623 (66%) patients with a median follow-up of 29 months (2.4 years). This series included adults and children. In another set of case series that included only adults 456 of 707 (64%) patients were reported to have had complete remission with a median follow-up of 87 months (7.25 years). Among the variables available prior to splenectomy, age at the time of splenectomy most often correlated with response. Six case series studies used different radioisotope techniques to determine the site of platelet destruction and found that patients who had predominately splenic destruction had a better response than patients who had predominately non-splenic destruction. However 10 other case series did not support the site of platelet destruction as a good predictor of response. The authors caution that “the decision for splenectomy must be carefully balanced by consideration of the potential risks, since the rate of complications following splenectomy is relatively great. Mortality rates of 0.2% and 1.0%, with laparoscopy and open laparotomy, respectively.” The authors go on to warn that “the risks of splenectomy may be greater than described in this systematic review, since we did not evaluate long-term risks of sepsis and thrombosis.”

Kojouri, K., Vesely, S.K., Terrell, D.R., George, J.N., “Splenectomy for Adult Patients with ITP: A Systematic Review to Assess Long Term Platelet Count Responses, Prediction of Responses, and Surgical Complications,” Blood (prepublished online), June 24, 2004, DOI 10.1182/blood-2004-03-1168.


The July 2004 Bulletin of The National Organization for Rare Disorders (NORD) brought attention to the difficulty in updating drug labels to reflect the results of clinical trials completed after a drug has been approved by the FDA. Even if a company submits clinical trial data showing that a drug is not effective after a drug has received FDA approval, the information cannot be added to a drug’s label unless the manufacturer agrees. Triggered by recent disclosure of the ineffectiveness of some and the adverse effect of other medications, “medical societies, and especially pediatricians, are telling FDA it is unethical not to add information to drug labels if the FDA knows about it, even if the manufacturers object.”

NORD On-Line Bulletin, “Keeping Negative Clinical Trial Results Secret,” July 2004, pp2,3.


NovoSeven, a drug used to prevent hemophilia patients from bleeding to death, shows promise of lowering the risk of disability and death for victims of bleeding stroke. The drug is a clotting agent called factor VIIa, a protein that causes blood clots to form. It was administered to bleeding stroke patients at Columbia Medical Center in New York. The study was designed to test the drug’s safety and potential for reducing bleeding. The patients in the study received an intravenous infusion of the drug, in one of three doses, or a placebo. Twenty-four hour follow-up revealed that any of the three doses reduced bleeding in the brain by about half. At three month follow-up those receiving the drug were approximately 30% less likely to die or be left severely disabled (paralyzed or in a coma). Close to 70% of those receiving the placebo either died or were severely disabled. On the downside, those receiving the drug were about 6% more likely to suffer heart attacks or blood clot caused strokes. The study was funded by the manufacturer and most comments suggested more testing to determine the relative risks and benefits of the treatment.

Stein, R, “Possible Therapy for Bleeding Strokes,” The Washington Post, June 27, 2004, p. A14.

(NovoSeven has also been used off-label to help stop internal bleeding in patients with ITP)


The spleen is important in protecting humans from babesiosis, a rare tick-transmitted disease. In the United States it is found mainly in New England (especially the coastal islands) and the Great Lakes Region. It takes from one to six weeks (in some cases up to three months) for symptoms of this disease to appear. Symptoms vary widely from a mild case without visible symptoms, to more severe cases where the flu-like symptoms include tiredness, loss of appetite, fever, drenching sweats, and muscle pain that may be accompanied by nausea, anemia, and weight loss. Humans who have had a splenectomy, the elderly, and those who have had a serious disease, such as cancer or AIDS, are at a higher risk of infection. Stained blood smears are the most common diagnostic tool in conjunction with patient history. In more serious cases clindamycin and quinine are the standard treatment. Best prevention is to stay away from the New England and the Great Lakes Region between May and September. In these areas wear protective clothing and use tick repellant.

Talsky, J, “Babesiosis in Humans,” Science Education, July 30, 2003,$115

Note: Babesiosis is a life threatening infection for splenectomized patients and for all patients when treatment is delayed. Splenectomized patients have an additional hurdle in that an important part of treatment is quinine which has been associated with (some suggest causes) low platelet counts.


Some promise for treating inflammatory diseases comes from an unlikely source. Treating glaucoma, a buildup of fluid that causes pressure in the eye, involves surgically implanting an artificial tube to drain the fluid. In one-third of all patients the treatment is not effective due to the formation of scar tissue that blocks the surgically implanted tube. To prevent the formation of this scar tissue, researchers turned to protein-sized polymers called dendrimers. Sugar molecules were added to the outer tips of the polymer chains. These sugar molecules were known to bind to the immune cells involved in the inflammation and the scaring. Injecting a solution containing these dendrimers into the eyes of rabbits that had undergone glaucoma surgery reduced the scaring significantly. The success rate of the surgery increased from 30% to 80%. Donald Tomalia, of Dendritic Nano Technologies, suspects that this strategy could be important in developing therapies for inflammatory diseases like rheumatoid arthritis.

Goho, A, “Velcro Therapy,” Science News, July 31, 2004, vol 166, p70.


Gone are the days of going to the hospital and relinquishing full control of your care to the hospital staff of nurses, physicians and administrators. For example, in 2002 approximately 500 hospitals and health care facilities across the country reported nearly 200,000 mistakes in prescribing and dispensing medicine. In February new FDA regulations required bar codes on commonly used prescription drugs. About 2% of hospitals have such a system in place today. (The FDA has given institutions 2 years to implement this change.) In the mean time we suggest you know the purpose and appearance of all medications and monitor your care closely.

Another alarming statistic is the fact that 2 million patients acquire an infection while in the hospital each year. The best that you can do in this area is to be sure you as the patient as well as your caregivers and guests wash their hands at the start and the end of their visit.

Also avoid hospitals from mid-December through the end of the first week of January. In teaching hospitals avoid the period mid-June through the middle of July when new residents begin training.

Simon, N., “Good Medicine,” Time Bonus Section, September 2004.


Platelet E-News – September 16, 2004

This e-newsletter is a monthly publication of The Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a health care professional.


  • Clinical Trial Registration: Medical Journal Editors Speak
  • H pylori Eradication Therapy for ITP: Thoughts on the Different Results
  • NIH Expands Health Information Web Site
  • Blood Cells Excitable Just Like Nerve Cells
  • Platelets Feel Your Pain
  • Infliximab Associated with Risk of Thrombocytopenia
  • New Immunosuppressive Drug May Help Patients with Autoimmune Disease



The International Committee of Medical Journal Editors (ICMJE) has proposed comprehensive clinical trial registration as a solution to the problem of the selective announcing of the initiation, progress, and results of clinical trials. The proposal was made in an editorial published simultaneously in all member journals. It was signed by 12 editors of medical journals and the editor of Medline, a service of the National Library of Medicine. The editorial calls for a registry that is accessible to the public at no charge, open to all prospective registrants, and managed by a not-for-profit organization. It must have a mechanism to insure the validity of registration data and be electronically searchable. The editorial also specifies the minimum data elements that must be included and makes registration of a clinical trial at or before patient registration a necessary condition for publication in the journals that make up the ICMJE.

New England Journal of Medicine, September 9, 2004, pp1250-1251


Some years ago, Italian researchers reported the recovery from ITP in a large percentage of patients treated to eradicate H pylori infection. Other researchers, in the United States and elsewhere, have had difficulty duplicating these results. A recent communication reported in “Blood” (The journal of the American Society of Hematology) suggests that this discrepancy in the clinical response to eradication therapy might be due to differences in the bacterial strains. In the patients who responded to the eradication therapy, the level of an antibody associated with H pylori declined. The level of H pylori antibody did not decline in the patients who did not respond. The H pylori antibody is specific to different strains of H pylori. The authors of the “Blood” correspondence suggest “that molecular mimicry between the H pylori antibody and a platelet antigen might mediate the autoimmunity in some chronic ITP patients (the ones who respond to the eradication therapy).”

Blood, July 15, 2004, p 594


The National Institutes of Health (NIH) has launched an expanded health information Web site It includes three new sections. The Healthy Lifestyles section addresses nutrition and weight loss; the Research in Action section provides information on stem cells and genetics; and the Now Online section deals with current topics of interest. The new site provides links to popular health databases and information for people of all ages, including children and teens.

Orphan Disease Update, Summer 2004, p 16.


In 1978 it was shown that a Guinea pig megakaryocyte (cell in the bone marrow that gives rise to platelets) when stimulated with an electric current fired exactly as a neuron (brain cell) would under the same conditions. We now recognize that blood cells, like neurons, generate and store electric potential energy. It is also accepted in the scientific community that when a blood cell like a platelet performs any of its functions, electric energy is spent through many of the same chemical steps or pathways that exist in brain and muscle cells. Current research published in the journal “Blood” reports that human stem cells (primary human CD34+ hematopoietic stem and progenitor cells) “express not only genes encoding many of the ion channels (chemical pathways) found in the brain, but also a variety of other proteins whose roles have been primarily defined in the nervous system.” Sullivan goes on to say that “in their paper, Steidl et al go to great lengths to show that many neurobiologic genes are not only expressed at both the mRNA (messenger RNA) and protein level in CD34+ cells, some of them exhibit their predicted functions in these cells. …The blood-brain barrier is weakening”

Richard Sullivan, “Blood Cells: Excitable at Last”, Blood, July 2004, vol 104, n 1, p 5.


Recent research shows that the brain and body both respond to the same family of stimulating peptides. Tachykinins, stimulating peptides, are widely expressed in central and peripheral nervous systems and participate in neurotransmission. Recent research has addressed the possibility that platelets respond to tachykinins. This possibility was raised because a high concentration of a tachykinin, neurokinin B, by the placenta has been linked to pre-eclampsia, a hypertensive (high blood pressure) disorder occurring during pregnancy. Since platelet dysfunction is associated with pre-eclampsia, Graham and colleagues addressed the possibility that platelets respond to tachykinins. Their work forms strong evidence that tachykinins influence platelet function. Robert Flaumenhaft of the Harvard Medical School in commenting on the work of Graham and colleagues says, “It is conceivable that under certain physiologic conditions tachykinins mediate cross talk between these 2 cell types (platelets and neurons).

Robert Flaumenhaft, “Platelets Feel Your Pain”, Blood, August 2004, vol 104, n 4, p 913.


Additional warnings have been added to the labeling of infliximab (Remicade). According to the notification letter, postmarketing cases of lekopenia, neutropenia, thrombocytopenia, and pancytopenia, some with fatal outcome, have been reported in patients treated with infliximab for rheumatoid arthritis and Crohn’s disease. Infliximab was approved in the US on August 24, 1998 and since that time 508 cases of hematologic and neurologic problems have been reported by the approximately 509,000 patients who have used the drug. Infliximab is an anti-TNF drug that works by blocking the tumor necrosis factor (TNF), a protein involved in causing inflammation. Other ant-TNF drugs on the market, Enbrel and Humira, carry similar label warnings regarding blood disorders.


A drug that presently carries the name CP-690,550, shows promise as a therapy for quieting the overactive immune system in patients with autoimmune disease. Dr. Borie, who is studying the drug, said it holds promise of suppressing the immune system without major side effects. This drug inhibits the enzyme Jak3 that is found only in immune cells. Studies show that inhibiting this enzyme suppresses the immune system while not affecting other systems of the body. Much work remains.

NIH News, October 30, 2003
“Preventing Transplant Rejection ---Research Summary” July 9, 2004


Platelet E-News – October 15, 2004

This e-newsletter is a monthly publication of The Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a health care professional.


  • Two Simple Tests to Prevent Strokes
  • Research Hospital Dedicated at NIH
  • Emotions Linked Indirectly to Heart Disease
  • NIH Bans New Outside Collaboration
  • Healthy Gut Source of Vitamin K
  • Several States Initiate Program to Lower Drug Costs
  • Your Shower as Microbe Hideout



Strokes were the third leading cause of death in the United States in 2001 behind heart disease and all cancers. Many who are stricken are seemingly in good health. Much of this mortality and disability associated with strokes could be avoided with two simple, relatively inexpensive tests. One is the carotid ultrasound test that spots fatty plaque buildup in the carotid arteries. This buildup curtails blood flow to the brain and can be the cause of a stroke. Experts estimate that carotid strokes account for one-third to one-half of all strokes. The other test is the ankle-brachial test that provides an indication of plaque buildup throughout arteries in the entire body. The tests can cost several hundred dollars but many facilities charge much less. Neither Medicare nor private health insurance companies pay for these tests for screening purposes. Screening information is available at .

T. M. Burton, “Two Simple Tests Can Prevent Stroke, But Few Get Them”, Wall Street Journal, Sept 24, 2004, pA1.

(Note: people with ITP, even those with low platelets, are not protected from strokes)


Last month the National Institutes of Health dedicated the 238-bed Mark O. Hatfield Clinical Research Center on the NIH Bethesda, Maryland campus. Dr. Elias A. Zerhouni, director of NIH said “there is nothing out there like it.” The new NIH center is unique in that it combines a large size and research labs. There are 80,000 patients on the NIH’s active rolls. Last year 8,600 new patients were admitted to the current clinical center with the average length of stay 8.5 days. Care at the new hospital is entirely free to the patient. Except for unusual circumstances, no insurance companies are billed either. The taxpayer foots the whole bill. The building is flooded with natural light and flexibility is built in everywhere. The building has been designed to last 50 years at a cost of over $600 million with another $30 million for furnishings. Scientists will be moving labs during the next several months. All patients will move during a single day, December 4, 2004. One patient called it “the house of hope”

D. Brown, “NIH Dedicates New Research Hospital”, Washington Post, Sept 23, 2004, p.A27.

See: to view a videocast of the ribbon cutting ceremonies and other NIH meetings.


The link goes like this. High levels of a substance called C-reactive protein (CRP) in the blood have been associated with a variety of health problems including heart disease. Edward Suarez and colleagues at Duke University had 121 healthy men and women take a personality test that assessed levels of anger, hostility, and depression. Then this group was tested to determine the level of CRP in their blood. The study found that the subjects that scored high on the tests for anger, hostility, and depression had CRP levels in their blood two to three times higher than those who scored low on the personality test. Heart disease has been associated with high blood pressure, smoking, and an inactive life style. Now we can add psychological factors that activate the inflammatory process.

R. Stein, “Emotions, Heart Disease Linked”, Washington Post, Sept 27, 2004, pA27.

(Note: Inflammation as measured by CRP has been associated with some autoimmune diseases. See:


An important policy shift at the National Institutes of Health will ban all its scientists from any new collaborating arrangements with pharmaceuticals or biotechnology firms for at least one year and require all existing collaborations to be discontinued. The need for such a ban became apparent after the agencies own conflict-of-interest investigation turned up more problems and more serious ones than had been anticipated. The examples of ethics violations have been alarming to many. As many as 100 NIH scientists are involved in collaborations that will have to be discontinued. Many others, it is thought, have recently dropped their collaborating arrangements in light of all the recent attention.

R. Weiss, “NIH Bans Collaboration With Outside Companies”, Washington Post, Sept 24, 2004, pA23.


A healthy gut includes a population of “friendly” bacteria (probiotics) that help digest food and just as important produce certain vitamins, like vitamin K. Dr. Andrew Weil points out certain foods like yogurt, the best-known probiotic food, and miso, which is fermented soybean paste, as excellent foods to help maintain a healthy gut. Other helpful probiotic foods include kefir, which is similar to liquid yogurt, and sauerkraut. Dr Weil prefers probiotic supplements to probiotic foods to assure an adequate supply of the friendly backteria. He recommends Culturelle but cautions the use of the supplements by people “with compromised immune function as they could theoretically develop an infection from the probiotic organisms.”

Dr. A. Weil, “Probiotics: Beneficial Bacteria”, Self Healing, October 2004, p1.

(Note: Vitamin K is needed for your blood to clot)


The state of Illinois has initiated, with the strong support of Governor Blagojevich, the I-SaveRX program to save state residents from 25% to 50% on their prescription refill costs. There will be direct savings to the states for the drug benefit programs it offers state employees. While not all drugs are available, the list is extensive. The medications are available from 45 licensed, inspected pharmacies in Canada, Ireland, and Great Britain. The I-SaveRX program is presently available only to residents of Illinois and Wisconsin but other states are considering adopting the program. The program requires your physician’s approval and signature on your application. Also you qualify only for medications that were first filled at a pharmacy in the U.S. and which you have been taking for 30 days without adverse side effects. There is a one page application that with your physician’s signature can be mailed or faxed to CanaRx Services Inc. The Illinois form and available medications are available at

Weekly Email, HealthAssistance Partnership, October 4, 2004, p.3.


If your immune system is weakened, take note. Infectious diseases have been on the increase for a decade or more. Researchers have been searching ever more diligently for any overlooked sources of germs. Recently a most unlikely hideout was discovered by scientists at the University of Colorado at Boulder. The soap scum from vinyl shower curtains yielded a host of pathogens including the Sphingomonas bacteria which can cause urinary tract infections, pneumonia, and skin ulcers. Another critter discovered in the same hideout was Methlobacterium which also can cause pneumonia, skin ulcers, and inflammation of the cornea. These pathogens are especially a risk for those with a weakened or troubled immune system. The researchers recommend a 10 % bleach solution to keep them in check.

Alternative Medicine Newsletter, News, October 2004.

(Note: Those with certain diseases and conditions, especially ITP, take warning; the bleach solution could be as bad as or worse than the problem. Bleach is a strong chemical and great care is required in using it. If you have ITP consider using a less potentially harmful method of control, maybe washing with a detergent in hot water.

Many medications used to treat ITP weaken the immune system making people more susceptible to opportune infections. People who have had a splenetomy are particularly vulnerable to pneumonia)

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