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 healthcare professional.
People with ITP who had a splenectomy were about three times more likely to develop a blood clot in their veins, almost twice as likely to develop a blood clot in their abdomen soon after surgery, and had a slightly higher risk of developing sepsis, a severe blood infection. To reach these conclusions researchers examined the medical records of 1,762 splenectomized patients with ITP and compared them to 8214 people with ITP who did not have the surgery.
Boyle S et al. “Splenectomy and the incidence of venous thromboembolism and sepsis in patients with immune thrombocytopenia.” Blood. 2013 May 1.
http://www.ncbi.nlm.nih.gov/pubmed/23637127

Anderst JD et al. “Clinical Report:Evaluation of Bleeding Disorders in Suspected Child Abuse.” Pediatrics. 2013 April 131(4):e1314-22.
http://pediatrics.aappublications.org/content/early/2013/03/18/peds.2013-0195.full.pdf
Carpenter SL et al. “Evaluating for Suspected Child Abuse: Conditions That Predispose to Bleeding.” Pediatrics. 2013 April 131(4):1357-1373.
http://pediatrics.aappublications.org/content/early/2013/03/18/peds.2013-0196.full.pdf
H. pylori, a bacteria found in the stomach, has been associated with many diseases, including ITP. Researchers in China found that children with ITP had twice the rate of H. pylori infection than those without the disease. They divided the children with ITP and H.pylori into two groups and assigned them to two treatment protocols: steroids and steroids plus antibiotics. The children treated with antibiotics to eradicate the H.pylori had a better response to the treatments and were less apt to relapse. This confirms earlier research and indicates the potential benefit of identifying and eradicating H.pylori in children with ITP.
Tang Y et al. [Clinical significance of helicobacter pylori in children with idiopathic thrombocytopenic purpura].Zhongguo Shi Yan Xue Ye Xue Za Zhi. 2013 Mar 21(2):419-21.
http://www.ncbi.nlm.nih.gov/pubmed/23628045
Russo G et al, “Effect of eradication of Helicobacter pylori in children with chronic immune thrombocytopenia: a prospective, controlled, multicenter study.” Pediatr Blood Cancer. 2011 Feb;56(2):273-8.
http://www.ncbi.nlm.nih.gov/pubmed/20830773
ITP experts from London have done all of us a favor by creating a single journal article that explains why a treatment that stimulates platelet production is successful in raising the platelet count of people with ITP. The article describes romiplostim (Nplate®), how it works, why it works, and how successful it has been in clinical trials, along with the usual side effects and its effect on the quality of life of patients. The entire journal article is available FREE.
Cooper N et al. “The efficacy and safety of romiplostim in adult patients with chronic immune thrombocytopenia.” Ther Adv Hematol. 2012 October; 3(5): 291–298.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3627322/

“Report outlines ‘vast variations’ in hospital costs.” Hem/Onc Today. May 9, 2013.
http://www.healio.com/hematology-oncology/practice-management/news/online/%7B3506C9E5-5F3E-47BB-9946-950A6BC7BD91%7D/Report-outlines-vast-variations-in-hospital-costs
For several years the US Food and Drug Administration (FDA) has increased their outreach to consumers through meetings and newsletters. They recently completed the most ambitious part of their public communication efforts: the FDA Patient Network website (http://www.patientnetwork.fda.gov/). This comprehensive source gives everyone easy access to information about the regulatory process, diseases, clinical trials, medications, treatment options, and more.
“FDA Wants YOU (to Get Involved).” FDA Consumer Updates. April 23, 2013.
http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm348661.htm
People with compromised immune systems (for example, those without a spleen or taking immune-suppressing drugs like prednisone) are at a greater risk of becoming very sick when exposed to listeria, a bacteria found in some food. Listeria is most prevalent in deli meats, hot dogs, smoked seafood, and store-prepared deli salads. But that is not an inclusive list since a few years ago it was found in cantaloupes. To prevent illness caused by listeria (listeriosis) keep refrigerated foods cold, clean your refrigerator regularly, and clean hands and kitchen surfaces often. The FDA web site has details and more tips on avoiding listeriosis.
“Keep Listeria Out of the Kitchen.” FDA Consumer Updates. May 10, 2013.
http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm274114.htm

http://www.ewg.org/foodnews/summary.php
“Apples Top EWG's Dirty Dozen.” Environmental Working Group Press Release. April 22, 2013.
http://www.ewg.org/foodnews/press.php
Note: Pesticides have been linked to increased destruction of platelets in the spleen. For this reference and more information on the effects of environmental compounds on platelets see the ‘Warnings’ page:
http://www.pdsa.org/about-itp/warnings.html
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.
Contents:
Oxidative stress, the over-production of free radicals, is associated with many disease states, including ITP. In one study, newly diagnosed people with ITP had ten times the amount of vanin-1 protein (an indicator of oxidative stress), and those with chronic, non-responsive disease had three times the amount, compared to healthy controls. In another study, people with ITP had an increase in the blood proteins that signal oxidative stress and a decrease in the proteins that mitigate oxidative stress. In both studies, the authors conclude that oxidative stress may play a role in ITP and dealing with it may have therapeutic benefits.
Note: Diet, exercise, and relaxation techniques can reduce oxidative stress. See:
http://www.pdsa.org/treatments/complementary.html
Elsalakawy WA et al. “Value of vanin-1 assessment in adult patients with primary immune thrombocytopenia.” Platelets. 2013 Mar 27.
http://www.ncbi.nlm.nih.gov/pubmed/23534352
Jin CQ et al. “Antioxidant status and oxidative stress in patients with chronic ITP.” Scand J Immunol. 2013 Mar 30.
http://www.ncbi.nlm.nih.gov/pubmed/23551069
Epstein-Barr virus (EBV, a type of herpes virus linked to mononucleosis) and cytomegalovirus (CMV, another type of herpes virus) have been associated with the development of ITP. These viruses were evident in about 20% of the spleens of the 40 people with ITP studied, versus only one of 20 in the control group. Those with ITP whose spleens contained the Epstein-Barr virus had a reduced platelet count compared to those with ITP who were not exposed to this virus. There was no difference in the platelet counts for the ITP patients if they did or didn’t have CMV antibodies.
Note: The “International consensus report on the investigation and management of primary immune thrombocytopenia.” suggests that testing ITP patients for the presence of CMV can have some benefit.
http://bloodjournal.hematologylibrary.org/content/115/2/168.full
For information on how viruses can cause ITP see:
http://www.pdsa.org/about-itp/causes.html
Wu Z et al. “The role of Epstein-Barr virus (EBV) and cytomegalovirus (CMV) in immune thrombocytopenia.” Hematology. 2013 Mar 22.
http://www.ncbi.nlm.nih.gov/pubmed/23540727

In a study of hospital records in the US from 2008 to 2010, researchers found 2,314 children (age 1 – 18) admitted with a new diagnosis of ITP. Although guidelines recommend a conservative and mostly watchful waiting approach to children with ITP, 90% of the children in this hospital study received a treatment, usually IVIg. There was considerable geographic variation in treatment strategies, length of stay, charges, and readmission rates.
Neunert CE et al. “Bleeding manifestations and management of children with persistent and chronic immune thrombocytopenia: data from the Intercontinental Cooperative ITP Study Group (ICIS).” Blood. 2013 Apr 2.
http://bloodjournal.hematologylibrary.org/content/early/2013/04/02/blood-2012-12-466375.abstract Kime C et al. “Patterns of Inpatient Care for Newly Diagnosed Immune Thrombocytopenia in US Children's Hospitals.” Pediatrics. 2013 Apr 8.
http://pediatrics.aappublications.org/content/early/2013/04/03/peds.2012-2021.abstract
We first mentioned the success of this combination in our January 2013 e-news when the study results were available on-line. Since the paper has been in print, this therapeutic approach has gained traction with articles in other venues and with more published research. In short, it has people talking. In this study published in Blood, the rituximab (Rituxan®) plus dexamethasone group had a better response (and a greater number of side effects) than the dexamethasone-only group. But what sets this study of newly diagnosed ITP patients apart is that it was a randomized controlled trial comparing two treatments for ITP with a relatively long follow-up period.
The Blood study used the lymphoma dose of rituximab. Another study, looking at prior patient experience, showed that using a lower dose of rituximab plus dexamethasone was more effective than prednisone for newly diagnosed patients.
Rao VK. “ITP: hematology's Cosette from Les Miserables.” Blood. 2013 Mar 14;121(11):1928-30
http://bloodjournal.hematologylibrary.org/content/121/11/1928.long
”Rituximab improved dexamethasone response rates in immune thrombocytopenia.” Healio Hematology/Oncology April 4, 2013.
http://www.healio.com/hematology-oncology/hematology/news/online/%7Bd1c2680d-b565-45f3-b173-0d40fd8be316%7D/rituximab-improved-dexamethasone-response-rates-in-immune-thrombocytopenia
Gudbrandsdottir S et al. “Rituximab and dexamethasone vs dexamethasone monotherapy in newly diagnosed patients with primary immune thrombocytopenia.” Blood. 2013 Mar 14;121(11):1976-81.
http://www.ncbi.nlm.nih.gov/pubmed/23293082
Gómez-Almaguer D et al. “High response rate to low-dose rituximab plus high-dose dexamethasone as frontline therapy in adult patients with primary immune thrombocytopenia.” Eur J Haematol. 2013 Mar 7.
http://www.ncbi.nlm.nih.gov/pubmed/23470153
Selected physicians in Canada, France, and the US participated in a survey to assess the quality of information they received from consecutive visits by pharmaceutical sales representatives. The pharmaceutical reps mentioned adverse events in about 5% of drug promotions, although 45% of these drugs had black box warnings, a sign that the FDA considered them to have significant potential problems. More harm information was mentioned in France, a country that has stricter laws regarding pharmaceutical promotion. Despite the lack of information, doctors said they were ready to prescribe the treatments 64% of the time. This research questions “whether current approaches to regulation of sales representatives adequately protect patient health.”
Mintzes B et al. “Pharmaceutical Sales Representatives and Patient Safety: A Comparative Prospective Study of Information Quality in Canada, France and the United States.” J Gen Intern Med. 2013 Apr 5.
http://www.ncbi.nlm.nih.gov/pubmed/23558775, http://link.springer.com/article/10.1007/s11606-013-2411-7

(http://www.nextstepincare.org/next_step_in_care_guides/4/HIPAA/english)
Span P. “A Privacy Law Often Misinterpreted.” New York Times. March 7, 2013.
http://newoldage.blogs.nytimes.com/2013/03/27/a-privacy-law-often-misinterpreted/
Our long-time readers know that PDSA has always advocated eating leafy greens, especially kale and collards, for many reasons. Now there is another one. New research shows that leafy greens can switch on the genes that create innate lymphoid cells (ILCs), a type of immune cell that lives in our digestive system. “ILCs are essential for maintaining the delicate balance between tolerance, immunity and inflammation,” the very factors that play a part in developing ITP and maintaining low counts. The researchers, surprised that food could control gene expression, are exploring this further.
Press release. “Gene discovery reveals importance of eating your greens.” Walter+Elisa Hall Institute of Medical Research. April 3, 2013.
http://www.wehi.edu.au/site/latest_news/gene_discovery_reveals_importance_of_eating_your_greens
Rankin LC. “The transcription factor T-bet is essential for the development of NKp46+ innate lymphocytes via the Notch pathway.” Nature Immunology 14, 389–395 (2013).
http://www.nature.com/ni/journal/v14/n4/abs/ni.2545.html

Note: CMV infections have been associated with the diagnosis of ITP (see “More Viruses Found in ITP Patients” above) and hay fever and allergies are a sign of an over-active immune system.
Clayton EM et al. “The impact of bisphenol A and triclosan on immune parameters in the U.S. population, NHANES 2003-2006.” Environ Health Perspect. 2011 Mar;119(3):390-6.
http://www.ncbi.nlm.nih.gov/pubmed/21062687
This e-newsletter is published by the Platelet Disorder Support Association, 133 Rollins Avenue, Suite 5, Rockville, MD 20852, phone 1-87-Platelet, fax: 301-770-6638, web: http://www.pdsa.org, e-mail: pdsa@pdsa.org
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.
Contents:
For almost everyone who takes them, the thrombopoietin agents (romiplostim and eltrombopag) promote a safe platelet count as long as they are given. However, for some, the platelet count can remain at a safe level when the treatments are discontinued. In a study of 31 chronic ITP patients taking TPO agents in a single practice, nine were able to discontinue the treatments and retain their elevated platelet count. In three of these patients, the platelets remained above 100,000/µl and didn't return to baseline. This study supports the practice of gradually lowering the dose of these treatments.
Ghadaki B et al. "Sustained remissions of immune thrombocytopenia associated with the use of thrombopoietin receptor agonists." Transfusion. 2013 Mar 3.
http://www.ncbi.nlm.nih.gov/pubmed/23451917

Surgical guidelines suggest platelet counts of at least 50 000/µl before minor surgery and 80 000/µl before major surgery. Of the 494 participants in the eltrombopag (Promacta®/Revolad®) studies, 87 had either a major or minor non-dental surgery. Prior to their surgery the majority of these people had platelet counts within the guidelines and only two experienced a bleeding event. These findings show that eltrombopag can raise the platelet count to meet surgical guidelines for most patients.
Tarantino MD et al. "Hemostatic challenges in patients with chronic immune thrombocytopenia treated with eltrombopag." Platelets. 2013 Feb 12.
http://www.ncbi.nlm.nih.gov/pubmed/23402314
Patients taking romiplostim (Nplate®) for up to five years (recorded in a single-arm, open-labeled study) were generally able to maintain a platelet count of 50 000/µl. on stable doses of the treatment. No new side effects were noticed in the group and very few people required rescue therapies. There were few serious adverse events and these didn't increase with the length of time someone was treated
Kuter DJ et al. "Long-term treatment with romiplostim in patients with chronic immune thrombocytopenia: safety and efficacy." Br J Haematol. 2013 Feb 22.
http://www.ncbi.nlm.nih.gov/pubmed/23432528
Researchers looked at the humoral immunity of people with ITP, the part of the immune system present in body fluids, not regulated by cells such as white blood cells. To study humoral immunity they gave volunteers a dose of pneumonia vaccine and measured the antibodies people developed as a result of the shot. Normally, someone would develop antibodies against the types of pneumonia in the vaccine and therefore be less prone to get pneumonia. Of the people in the study, 39% showed signs of some immune deficiency. A specific antibody deficiency was the most common. The authors recommend that people with ITP get an evaluation of their immune function. This is especially important for people who have had a splenectomy since the spleen plays a role in antibody production.
Rahiminejad MS. "Evaluation of humoral immune function in patients with chronic idiopathic thrombocytopenic purpura." Iran J Allergy Asthma Immunol. 2013 Mar;12(1):50-6.
http://www.ncbi.nlm.nih.gov/pubmed/23454778
Hospitals, Insurance, and Medical Care Clinical trials in children are usually very small so it is important to report serious adverse events for drugs and devices used by children to the FDA. When reporting be sure to include the product name, type, dose, how it was used, age of the child, other medications or medical conditions, outcome, contact information for the person submitting the report, and the child's doctor. The FDA places these reports in a database that is monitored by staff to determine if additional follow-up is needed. You can report adverse event problems for children and adults on-line through MedWatch, http://www.fda.gov/Safety/MedWatch/HowToReport/default.htm
FDA Consumer Update. Report Kids' Problems With Medical Products. Feb. 19, 2013.
http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm339672.htm
In February, 17 medical societies added 90 more tests and procedures that are often unnecessary and could be harmful to the Choosing Wisely Web site. Choosing Wisely®, a campaign of the American Board of Internal Medicine Foundation, seeks to reduce treatment costs, reduce the risks associated with additional procedures, and change the medical culture of 'more is better." The group hopes information on the Web site will help patients engage in a conversation with their doctors when their situation matches those on the list.
Choosing Wisely: http://www.choosingwisely.org/

Salt, sodium chloride, found in processed foods and many home salt shakers, can alter CD4+ helper T-cells (TH17 cells), cells that help regulate the immune system. Researchers in Germany and the US found these altered TH17 cells caused additional inflammation which can lead to autoimmune disease. More salt led to more inflammation and more problems. Some salt is necessary for the body to function. However, pure sodium chloride, salt without accompanying minerals present in sea salt, may be causing more problems because minerals are absent from many people's diets.
Kleinewietfeld M et al. "Sodium chloride drives autoimmune disease by the induction of pathogenic TH17 cells." Nature. 06 March 2013.
http://www.ncbi.nlm.nih.gov/pubmed/23467095
McCarthy A. "Scientists Officially Link Processed Foods To Autoimmune Disease." PreventDisease.com. 07 March 2013.
http://preventdisease.com/news/13/030713_Scientists-Officially-Link-Processed-Foods-To-Autoimmune-Disease.shtml
Millions of people take drugs to lower their blood pressure and cholesterol. These drugs, taken individually or in combination, may trigger low platelets for someone susceptible to drug-induced thrombocytopenia. In a case report, doctors found that a low blood pressure medication, amlodipine (a calcium channel blocker with many different names) definitely caused their patient's low platelets and the cholesterol-lowering drug, simvastatin (Zocor) probably contributed to the low platelets as well. This case reminds us that some of the most popular drugs can cause low platelets and it is difficult to determine the specific drug culprit when someone is taking more than one drug.
For more information on drug-induced thrombocytopenia and a list of drugs that are known to cause low platelets see:
http://www.ouhsc.edu/platelets/ditp.html
Cvetković Z, et al. "Simvastatin and amlodipine induced thrombocytopenia in the same patient: double trouble and a literature review."J Clin Pharm Ther. 2013 Feb 26
http://www.ncbi.nlm.nih.gov/pubmed/23442182
This e-newsletter is published by the Platelet Disorder Support Association, 133 Rollins Avenue, Suite 5, Rockville, MD 20852, phone 1-87-Platelet, fax: 301-770-6638, web: http://www.pdsa.org, e-mail: pdsa@pdsa.org
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.
Contents:
Sometimes people with ITP do not require constant therapy. In a trial of short-term administration of eltrombopag (Promacta®/Revolade®) participants were given three short-term courses of the drug. Of those that responded to the first cycle, 87% responded to the second and 71% responded to both the second and third cycle. Adverse events did not increase with subsequent cycles. The authors conclude that eltrombopag is likely to be safe and effective for those people with ITP who need only intermittent treatment.
Bussel JB. “Repeated short-term use of eltrombopag in patients with chronic immune thrombocytopenia (ITP).” Br J Haematol. 2013. v160, pp.538–546.
http://onlinelibrary.wiley.com/doi/10.1111/bjh.12169/abstract
Scientists found that romiplostim (Nplate®) increased the number of megakaryocytes, the cells in the bone marrow that produce platelets, but decreased the ability of these megakaryocytes to spin off platelets. Increasing the dose of romiplostim increased these effects. Because this research was done in a test tube the scientists could explore some of the reactions in more detail. They found the platelet response correlated with the AKT protein involved in regulating cell survival.
Currao M et al. “High doses of romiplostim induce proliferation and reduce proplatelet formation by human megakaryocytes.” PLoS One. 2013;8(1):e54723. 2013 Jan 24.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3554640/
Doctors in Switzerland report three patients who had severe skin reactions to eltrombopag (Promacta®/Revolade®). In all three cases the skin problems cleared after eltrombopag was discontinued. Patient 1 was diagnosed with erythroderma, a scaly skin reaction. Patient 2 had exanthema, a wide-spread rash. Patient 3 had erythema, general redness. It is important to note that one of these patients had many other diseases and the other two had a history of allergic reactions.
Meyer SC et al. “Severe cutaneous toxicity related to Eltrombopag.” Br J Haematol. 2013. v160, pp.404–418.
http://onlinelibrary.wiley.com/doi/10.1111/bjh.12126/full
People with ITP Have More Surgical Complications
Surgical patients with ITP had more fatalities, more complications after surgery, longer hospital stays, a greater chance of going to the intensive care unit, and higher medical costs than those without ITP. This was particularly true if the person required red blood cell or platelet transfusions or was admitted during an emergency. To reach these conclusions researchers matched the medical records of people with ITP with those without the disease trying to isolate only those factors due to ITP.
Chang CC et al. “Adverse postoperative outcomes in surgical patients with immune thrombocytopenia.” Br J Surg. 2013 Jan 25.
http://www.ncbi.nlm.nih.gov/pubmed/23355086
The Affordable Care Act has many provisions. Some have been implemented; others will begin this year or later. For 2013: Insurance for small businesses and individuals must include essential health benefits in ten areas; Insurance, in most cases, must offer contraceptive coverage; States must plan for affordable insurance exchanges to be available January 1, 2014; Beginning January 1, 2014 insurers may not deny people coverage based on pre-existing conditions and must set insurance premiums evenly.
Haughton-Denniston P. “What’s New What's Next With the Affordable Care Act in 2013.” Dorland Health. January 7, 2013
http://www.dorlandhealth.com/case_management/trends/Whats-Next-With-the-Affordable-Care-Act-in-2013_2621.html
For additional information on the Affordable Care Act see:
http://www.healthcare.gov/

A new rule will require companies making drugs, biologics, devices, and supplies and receiving funds from federal healthcare programs (ex: Medicare, Medicaid) to report how much money they give to doctors and teaching hospitals. The Centers for Medicare and Medicaid Services (CMS) will begin collecting this data August 1, 2013 and will make it available on a public Web site by Sept. 30, 2014. According to Dr. Peter Budetti of the CMS, “Disclosure of these relationships allows patients to have more informed discussions with their doctors.”
“Affordable Care Act ‘Sunshine Rule’ Increases Transparency in Health Care.” CMS Press Release. February 1, 2013.
http://www.cms.gov/apps/media/press_releases.asp
Corticosteroids (ex. prednisone) can cause osteoporosis with even a small dose. However, deciding when and how to treat bone loss involves many factors: availability and affordability of conventional treatments, likely implementation of lifestyle changes, age, and fracture risk. The World Health Organization has developed a tool to help determine the potential for fracture risk to aid the decision process (http://www.shef.ac.uk/FRAX/). Whatever the risk, it is important for the physician and the patient taking corticosteroids to discuss this complication early in the treatment cycle.
Deal CL, “Recent recommendations on steroid-induced osteoporosis: More targeted, but more complicated.” Cleveland Clinic Journal of Medicine. February 2013. v80:2. pp.117-125.
http://www.ccjm.org/content/80/2/117.full.pdf+html

Rosenkranz MA et al. “A comparison of mindfulness-based stress reduction and an active control in modulation of neurogenic inflammation.” Brain, Behavior, and Immunity. January 2013. v 27.pp.174–184.
http://www.sciencedirect.com/science/article/pii/S0889159112004758
Note: ITP has been associated with increased inflammation.
This e-newsletter is published by the Platelet Disorder Support Association, 133 Rollins Avenue, Suite 5, Rockville, MD 20852, phone 1-87-Platelet, fax: 301-770-6638, web: http://www.pdsa.org, e-mail: pdsa@pdsa.org
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.
Contents:
Eltrombopag (Promacta®/Revolade®) and romiplostim (Nplate®) are similar to naturally occurring thrombopoietin (TPO) in that they stimulate the bone marrow to produce more platelets. While they are very effective, they don't work for everyone. Two patients were featured in a report demonstrating that switching from one agent to another may be beneficial. In one case the patient was given eltrombopag, then switched to romiplostim. In another patient, the switch was from romiplostim to eltrombopag. In both cases the patients improved with the second TPO option. Romiplostim and eltrombopag attach to a different position in the thrombopoietin receptor and that, along with subtle differences in the patients' genes, may explain these results.
Polverelli N et al. "Absence of bi-directional cross-resistance of thrombopoietin receptor agonists in chronic refractory immune thrombocytopenia: possible role of MPL polymorphisms." Br J Haematol. Dec. 29, 2012.
http://onlinelibrary.wiley.com/doi/10.1111/bjh.12186/full
The National Institute for Health and Clinical Excellence (NICE) in the UK issued draft guidance approving the use of eltrombopag (Revolade®) for qualified UK patients. The treatment is recommended for those people who have had a splenectomy and failed corticosteroids and IVIg or as a second- line treatment in cases where a splenectomy could cause problems. The final guidance is scheduled for May, 2013, and is dependent upon the manufacturer supplying the drug at a discount. Romiplostim was approved by NICE in 2011 with similar terms.
NICE Press Release. "NICE says yes in draft guidance to eltrombopag for the treatment of chronic immune (idiopathic) thrombocytopenic purpura." Dec. 18, 2012.
http://www.nice.org.uk/newsroom/pressreleases/NICESaysYesInDraftGuidanceToEltrombopagForTheTreatmentOfChronicImmuneIdiopathicThrombocytopenicPurpura.jsp
Painengda® is a new treatment being tested in China for the treatment of ITP as well as diseases with low amounts of white and red blood cells. The drug, a patented compound isolated from ginseng (a plant used to treat various ailments for centuries) stimulates the bone marrow to produce more blood cells and regulates the immune system. Based on successful animal testing, it was approved for clinical trials in 2010. Production of the compound is moving forward.
Note: Ginseng can interfere with the ability of blood to clot. However Painengda contains just one of the many compounds in ginseng and has different properties.
Gao RL,Chong BH. "Research and development of the effective components of panaxdiol saponin as new chinese patent medicine for treating hemocytopenia." Chin J Integr Med. 2012 Dec;18(12):897-902.
http://www.ncbi.nlm.nih.gov/pubmed/23238997
Dexamethasone (a corticosteroid similar to prednisone) and rituximab (Rituxan®) are both used to treat ITP soon after diagnosis. Perhaps a combination of the two would lead to a better recovery rate. To investigate that possibility researchers randomized 133 newly diagnosed patients into two groups, one group taking dexamethasone alone and the other trying the duo. The combo group did have a better response rate with 58% achieving a platelet count greater than 50,000/uL at six months versus 37% for the dexamethasone group. The combo group also had a longer-lasting response and more adverse events.
Gudbrandsdottir S, "Rituximab and dexamethasone vs dexamethasone monotherapy in newly diagnosed patients with primary immune thrombocytopenia." Blood. 2013 Jan 4.
http://www.ncbi.nlm.nih.gov/pubmed/23293082
Insurance companies in the US are sometimes asking for and getting double-digit rate increases (some more than 20%) in healthcare premiums, mostly for small businesses and individuals with their own health insurance. The rate hikes for employee-based plans are about 4%. Some states regulate insurance rates and others so not which leads to a big difference in the rates by state. Medical costs are expected to increase an average of about 7.5% next year.
Between 2003 and 2011 premiums for employee-based health insurance plans increased 62%, employee contributions increased 74%, and the cost of deductibles has risen 177%, indicating that everyone is paying more for insurance and getting fewer protective benefits.
Abelson R. "Health Insurers Raise Some Rates by Double Digits." New York Times. Jan. 5, 2013.
http://www.nytimes.com/2013/01/06/business/despite-new-health-law-some-see-sharp-rise-in-premiums.html
Schoen C. "State Trends in Premiums and Deductibles, 2003–2011: Eroding Protection and Rising Costs Underscore Need for Action." The Commonweath Fund Issue Brief. Dec. 12, 2012 | Volume 31.
http://www.commonwealthfund.org/Publications/Issue-Briefs/2012/Dec/State-Trends-in-Premiums-and-Deductibles.aspx (includes state-by-state variations).
Of the $2.2 trillion spent on healthcare in the United States, $1.2 trillion is wasted, according to a Price Waterhouse Coopers report. The wasteful practices fall into three categories: behavioral (where lifestyle changes can prevent or help the problem); clinical (overuse, misuse, underuse, missed opportunities or errors in medical care); and operational (administrative and other business costs that do not benefit the patient.)
"The price of excess: Identifying waste in healthcare spending." Price Waterhouse Cooper (complete report - free .pdf)
http://www.pwc.com/us/en/healthcare/publications/the-price-of-excess.jhtml
Americans die sooner and have more illnesses and accidents than those in 16 other affluent countries according to a report by the National Research Council and the Institute of Medicine. This was true for everyone including those with higher incomes, a college education, and health insurance. The average life expectancy for men, 75.6 years, was the lowest of all countries included in the report. The average life expectancy for women, 80.8 years, was the second lowest. A national conversation on the importance of public health could help mitigate the many factors that contribute to these disparities and close the wellness gap.
Radnofsky L. "U.S. Lags Peers in Life Expectancy." The Wall Street Journal. Jan. 10, 2013 page A2.
U.S. Health in International Perspective: Shorter Lives, Poorer Health. National Academies Press. 2013. (complete report - free .pdf)
http://www.nap.edu/catalog.php?record_id=13497
Note: PDSA encourages everyone to adopt healthy lifestyle practices.
See http://www.pdsa.org/products-a-publications/diet-a-lifestyle-info.html
Americans could theoretically gain up to two years in life expectancy if they reduced their sitting time to less than three hours per day, according to an analysis of available data. If TV watching was reduced to less than 2 hours per day, that act alone could increase life expectancy by 1.38 years. These research findings suggest that a sedentary life is a comparable health risk to smoking and obesity.
Katzmarzyk PT, Lee I-M. "Sedentary behaviour and life expectancy in the USA: a cause-deleted life table analysis." 2012. British Medical Journal Open.
http://bmjopen.bmj.com/content/2/4/e000828.full.pdf+html
This e-newsletter is published by the Platelet Disorder Support Association, 133 Rollins Avenue, Suite 5, Rockville, MD 20852, phone 1-87-Platelet, fax: 301-770-6638, web: http://www.pdsa.org, e-mail: pdsa@pdsa.org
Each year the annual American Society of Hematology (ASH) meeting attracts thousands of clinicians and scientists, worldwide, to learn about and report on the latest hematology research. This year's meeting, held December 6 to 9 in San Francisco, featured more than 10 hours of presentations and more than 80 pages of abstracts about ITP and related diseases. In this issue of the e-news, we report some trends.
The ASH abstract numbers are shown in parentheses. You can search on the number and read the complete abstract at: https://ash.confex.com/ash/2014/webprogram/start.html, after you 'agree' with the terms.
In this experiment doctors sent records of 20 patients with several different diagnoses to three experienced hematologists to see if they would reach the same conclusions. The ITP diagnosis matched for those with very low platelets and responded to prednisone or IVIg. However, the diagnosis often didn't match for people who had moderate platelet counts or who did not respond to those treatments. (3521) "Difficulties in Establishing the Cause of Thrombocytopenia Among Ambulatory Patients Referred to Hematology: An Agreement Study."
Researchers looked at 67 million adults in insurance databases and found 6,651 adults with primary ITP. 57% of those ITP patients had a bleeding-related episode. A brain bleed was reported in 1.1%. The study highlights the need to track both bleeding episodes and treatments to fully assess disease burden and effectiveness of treatments. (202) "Rate of Bleeding-Related Episodes (BREs) in Adult Patients with Primary Immune Thrombocytopenic Purpura (ITP): A Population-Based Retrospective Cohort Study of Administrative Medical Claims Data in the United States (US)."
People scheduled to take Rituxan should be screened for hepatitis B before getting the treatment since Rituxan can activate a hepatitis B infection. At a large hospital, researchers found screening was either not being done or not done well. They suggest a national program to make sure the screen is done and in a standardized way. (2595) "Hepatitis B (HBV) Screening in Patients Receiving Rituximab: A Comprehensive Analysis Including Comparison of Adherence by Oncologists and Non-Oncologists."
Researchers found high dose dexamethasone performed better than prednisone in newly diagnosed people with ITP. The authors suggested that dexamethasone would be a better first line treatment. (1455) "Conventional Oral Prednisone versus High-Dose Dexamethasone for Management of Adult Immune Thrombocytopenia: A Prospective Randomized Multicenter Clinical Trial."
While romiplostim (Nplate®) and eltrombopag (Promacta®/Revolade®) are similar drugs they are not completely alike. Most people who are taking Nplate can switch to Promacta without too many problems. Some people who have problems with Nplate may have a better response and easier time with Promacta, according to a Spanish study. In the study of 51 ITP patients, about half switched TPOs because of lack of efficacy. (2790) "Use of Eltrombopag after Romiplostim in Primary ITP Patients."
Now there's another good reason to know your anti-platelet antibody status. Researchers found ITP patients are more likely to respond to the TPO receptor agonists (Nplate®/Promacta®) if they don't have the anti-GP1b type of anti-platelet antibodies. This finding was also true for the patient's response to IVIg and steroids. (4190) "Response to TPO-Receptor Agonists: Role of Immature Platelet Fraction and Anti-GP1b."
In a survey of children with ITP ages 8 to 18, findings showed those who had the most side effects, were diagnosed for a shorter amount of time, were in the younger age group, and didn't participate in sports had a more impaired quality of life than those in other categories. PDSA was a prime contributor to this survey. (4843) "A Pilot Study to Assess Quality of Life in Older Children and Adolescents with Primary Immune Thrombocytopenia."
Children with chronic and persistent ITP were given eltrombopag (Promacta®) or their usual treatment. The study of 174 patients found that children given eltrombopag had higher platelet counts and a similar number of side effects compared to those receiving placebo. (1450) "PETIT and PETIT 2: Treatment with Eltrombopag in 171 Children with Chronic Immune Thrombocytopenia (ITP)."
If a patient has a splenectomy and their counts the day after the operation are close to or above 112,000 the chances are better that the splenectomy will be more successful. (1448) "The Day 1 Postoperative Platelet Count Predicts Splenectomy Response in Patients with Immune Thrombocytopenia."
People with ITP who have had a splenectomy had increased risk of infection and more cardiovascular problems (heart attacks and strokes) than people with ITP who did not have a splenectomy. In this study splenectomy success was 48% after 10 or more years. (232) "Long-Term Complications after Splenectomy in Adult Chronic Immune Thrombocytopenia with a Minimum Follow up of 10 Years. First Results from a Single-Center Case-Control Study of 140 Patients with Primary ITP."
A recent meta-analysis by researchers in the Netherlands found several predictive factors for development of chronic immune thrombocytopenia (ITP) in children. They reviewed data from 54 studies (1975 to 2013) of children (ages 3 months to 18 years) newly diagnosed with ITP. Clinical predictors of developing chronic ITP included: female gender, absence of previous infections or vaccinations, insidious (gradual without many symptoms) onset of ITP, and higher absence of bleeding. Children older than 11 were more likely to develop the chronic form of ITP. Researchers found platelet counts of 20,000 or higher at presentation and presence of antinuclear antibodies also increased risk for chronic ITP.
Research findings showed patients treated with a combination of methylprednisolone (steroids) and IV immunoglobulin (IVIg) were more likely to develop chronic ITP, while patients treated with just IVIg alone were found less likely to develop the chronic form. The researchers wrote, "The protective effect of IV immunoglobulin is remarkable and needs confirmation in prospective randomized trials, as well as future laboratory studies..."
Reference: Heitink-Pollé KM, Nijsten J, et al. "Meta-analysis identifies predictors of chronic childhood immune thrombocytopenia." Blood, 124 (22) November 20, 2014
http://www.bloodjournal.org/content/124/22/3295?sso-checked=true
Bridging ITP StudyDo you have ITP and need surgery?
You may be eligible for a clinical trial in Canada comparing eltrombopag with intravenous immune globulin (IVIG) before surgery.
Click here for more information
Medications were the leading cause of allergy-related sudden deaths in the US according to analysis of death certificates from 1999-2010 carried out by researchers at Montefiore Medical Center and Albert Einstein College of Medicine of Yeshiva University, in New York City. They found risk of fatal drug-induced allergic reactions was high among older patients and African American patients. A sudden, life-threatening allergic reaction is called anaphylaxis. It can occur rapidly after exposure to an allergen. Until recently data on anaphylactic deaths had not been well understood. One reason: unlike countries like the UK, the US does not maintain a national registry for anaphylaxis deaths.
Researchers analyzed death certificates from the US National Mortality Database. Medication-related anaphylaxis was the most common cause of death (58.8 %). In reports of 2,458 deaths between 1999-2010, of the culprit drugs mentioned, almost half were antibiotics, followed by radiocontrast agents (for diagnostic imaging studies) and chemotherapy drugs. They found a significant increase in fatal drug allergy deaths, from 0.27 per million in 1999-2001 to 0.51 per million in 2008-2010. They hope their findings bring increased awareness of the need for better understanding of allergy-related deaths.
Reference: Jerschow E, Lin, R, et al. "Fatal anaphylaxis in the United States, 1999-2010: Temporal patterns and demographic associations." Journal of Allergy and Clinical Immunology, September 2014.
http://www.sciencedaily.com/releases/2014/09/140930132506.htm

Note: ITP patients with low (below 40,000) platelet counts should be careful of eating many foods with bright red, blue or purple skins (such as blueberries, red grapes, and cranberries) as they can affect the way platelets function, slowing the clotting process. See 'Warnings' on our Web site: http://www.pdsa.org/about-itp/warnings.html Discuss any concerns with your doctor.
Reference: Nantz MP, Rowe CA, Muller C. "Consumption of cranberry polyphenols enhances human γδ-T cell proliferation and reduces the number of symptoms associated with colds and influenza: a randomized, placebo-controlled intervention study." Nutrition Journal. December 13, 2013, 12:161. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3878739/

The EU Center for Disease Prevention (ECDC) recommends that travelers or residents returning from an Ebola Virus Diseases (EVD) affected area should be deferred for donation of plasma for fractionation for two months after return. The Ebola virus incubation period is estimated at 25 days. PPTA's voluntary Hold of all incoming plasma for fractionation of 60 days would be adequate to allow for removal of a unit in question, if necessary. PPTA said it is not likely Ebola virus would be introduced into a plasma pool for fractionation because individuals are rejected for donation if they have viral infection symptoms, such as fever. As an additional safeguard, the PPTA Source Board has endorsed a recommendation for implementing a voluntary deferral of 60 days for donors returning from EVD affected areas.
Reference: Plasma Protein Therapeutics Association, "Ebola Virus and Plasma Protein Therapies." Statement issued Oct. 13, 2014.
http://www.pptaglobal.org/28-news/ppta-news/922-ebola-virus-and-plasma-protein-therapies

In the Phase 3 clinical study, 150 chronic ITP patients will be randomly divided into two identical, multi-center, double-blind, placebo-controlled groups. Patients will have platelet counts of 30,000 or less. Two thirds will receive the treatment and one-third will receive the placebo. Main endpoint of the study is a stable platelet response by week 24 with counts of 50,000 or higher. Results are expected by the end of 2015.
Reference: "Rigel Initiates Phase 3 Studies of Fostamatinib in ITP." Market Watch, July 16, 2014.
http://www.marketwatch.com/story/rigel-initiates-phase-3-studies-of-fostamatinib-in-itp-2014-07-16-8183350
The Division of Blood Disorders at the US Centers for Disease Control (CDC), along with the National Hemophilia Foundation (NHF) and Harris Interactive conducted a national internet survey of young women. The survey was used to learn more about young women's thoughts on menstruation or menstrual periods (part of a woman's monthly cycle) and heavy bleeding. They wanted to understand what young women know about bleeding disorders in general and if they are familiar with signs and symptoms of a bleeding disorder. There were 1,243 young women (age 18-25) who participated in the survey.
Bleeding disorders occur when the blood cannot clot properly. Well-known bleeding disorders include von Willebrand disease (VWD) and hemophilia. Immune thrombocytopenia (ITP) is also a bleeding disorder that affects young women. Women with bleeding disorders are more likely to experience heavy bleeding (called menorrhagia) during their periods and excessive blood loss during and after childbirth.
CDC and the NHF will use the findings in developing health promotion materials to encourage women with bleeding symptoms to see a doctor.
References: "New Survey Findings on Young Women and Bleeding Disorders." Centers for Disease Control and Prevention (CDC), Oct. 8, 2014. http://www.cdc.gov/ncbddd/blooddisorders/women/features/keyfinding-womenbleedingdisorders.html & http://www.cdc.gov/ncbddd/blooddisorders/women/research.html & http://www.cdc.gov/ncbddd/blooddisorders/women/research.html

References: Giuliana Noratto, et al., "Assessing non-digestible compounds in apple cultivars and their potential as modulators of obese faecal microbiota in vitro." Food Chemistry, September 2014: http://www.sciencedirect.com/science/article/pii/S0308814614005251 & https://news.wsu.edu/2014/09/29/an-apple-a-day-could-keep-obesity-away/#.VE2BF_nF-F8

Prodi E, Giordano P, Rivetti E, et al., "Efficacy of combined intravenous immunoglobulins and steroids in children with primary immune thrombocytopenia and persistent bleeding symptoms." Blood Transfus. 2014 July: 12(3): 340-345.
http://www.ncbi.nlm.nih.gov/pubmed/24887226

Selleslag D, Bird R, Altomare I, et al., "Impact of self-administration of romiplostim by patients with chronic immune thrombocytopenia compared with administration by a healthcare provider." Eur. J. Haematol. 2014, July 14, [Epub ahead of print] http://www.ncbi.nlm.nih.gov/pubmed/25039799
Blood is among the most precious and most perishable of commodities in health care. Red cells may last five weeks, but platelets which are key to clotting and preventing bleeding, last less than a week. Because of short shelf life of blood products hospitals across the country waste huge amounts of blood worth millions of dollars annually.
At the University of Pittsburg Medical Center (UPMC) ways are being found to reduce this waste. Buying and storing only what the hospital needs is key but with platelets that is easier said than done. Platelets have the shortest shelf life of any blood cells, and are very temperature sensitive. If frozen or even refrigerated the transfused platelets will leave the person's system too quickly. UPMC redesigned their blood supply chain and changed the standards of when patients would require a blood transfusion. They reduced the number of blood donations by patients prior to operations, which the hospital found were unused in 50% of cases and had to be thrown out, wasting thousands of dollars.
"Bill Tolland, "UPMC is finding ways to squeeze savings, prevent waste." Pittsburgh Post-Gazette, 2014 July 29.
http://www.post-gazette.com/news/health/2014/07/29/UPMC-is-finding-ways-to-squeeze-savings-prevent-waste/stories/201407270062

Celery contains flavonoids like lutein and beta carotene that studies have shown lower inflammation and enhance the immune system. Recent studies found that celery reduced memory loss and brain inflammation in mice. For centuries Ayurvedic medicine has used celery for colds and flu, digestion problems, and liver and spleen disorders. So go ahead and enjoy crunchy fresh celery in your next salad, stir fry, soup, or veggie tray!
"What is Celery Good For?" Dr. Mercola Online newsletter, August 8, 2014.
http://foodfacts.mercola.com/celery.html

The findings are important for surgery and traumatic injuries, which often require large amounts of blood transfusions. Experts disagree as to which blood products are most helpful for controlling bleeding. More heavily refined blood products strip away most proteins found in the blood, including fibronectin. Dr. Ni's research indicates that the less-refined blood product that contains fibronectin helps stop bleeding more effectively.
St. Michael's Hospital. "Protein in plasma may one day change transfusions." Science Daily, 2 Sept 2014.
http://www.sciencedaily.com/releases/2014/09/140902205337.htm
Wang Y, Reheman A, Spring CM, Kalantari J, et al. "Plasma fibronectin supports hemostasis and regulates thrombosis." Jour Clin Investigation, 2014; DOI: http://www.jci.org/articles/view/74630
Photo credit: St. Michael's Hospital

Note: Through its ITP Poke-R-Club for Kids PDSA is offering a Buzzy® to ITP children, whose parents are PDSA members. See details here: http://www.pdsa.org/resources/itp-poke-r-club.html
"Buzzy4PainRelief Announces 510(k) Clearance from FDA." Press Release, MMJ Labs LLC, 2014 September 11. http://www.prweb.com/releases/2014/09/prweb12158304.htm
For more about Buzzy® visit the Web site:
http://buzzy4shots.com/health-care/clinical-support/
Patients can now see results for various medical tests, including complete blood counts (CBCs), allergy tests, and urinalysis. In April 2014 a new federal rule went into effect. Results must be available upon request within 30 days; no doctor's authorization is required. The 30-day window gives doctors a chance to review the test results and meet with the patient to discuss if findings are complex. Lab companies like Quest Diagnostics are launching new secure patient web sites, such as MyQuest by Care360. Patients can view their results for no cost.
Past research showed it was common for abnormal test results to fall through the cracks, delaying care for some patients. Some patients said doctors were too busy or even reluctant to share test results with them. In a 2013 Kaiser survey, patients who viewed their lab reports online overwhelmingly reacted positively. Many patients said ready access to their test results encouraged them to learn more about the cells in their blood and their own illnesses.
"Landro, L. "Medical Test Results Become Patient Friendly," Health & Wellness D2, The Wall Street Journal, 2014, Sept. 16. http://online.wsj.com/articles/medical-labs-make-test-results-easier-for-patients-to-understand-1410822452

In a separate study, the scientists analyzed 400 people and found gut bacteria of those who used artificial sweeteners were quite different from those who did not. Researchers said their findings are preliminary. They could not recommend whether people should or should not use artificial sweeteners. A scientist at the nonprofit Center for Science in the Public Interest praised the research. She said people shouldn't see the findings as suggesting sugar-sweetened beverages are preferable to those with artificial sweeteners.
Dennis, B. "Artificial Sweeteners Could Cause Spikes in Blood Sugar." Politics & The Nation, A3, The Washington Post, 2014, Sept. 18. http://www.washingtonpost.com/national/health-science/study-suggests-sweeteners-could-contribute-to-obesity-and-diabetes/2014/09/17/c3c04ea6-3dc2-11e4-b03f-de718edeb92f_story.html
IMPORTANT!
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.