Platelet E-News – July 15, 2002

This e-newsletter is a bi-weekly 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:

  • New drug being tested for lupus - ITP next?
  • New registry for children with ITP
  • Fun run to benefit PDSA
  • Meet others with ITP - Name Exchange Program
  • Help with health insurance complaints
  • Is maintenance therapy the choice for you (advertisement)

 

NEW DRUG BEING TESTED FOR LUPUS - ITP NEXT?

Human Genome Sciences (HGS) received approval Nov. 1, 2001 to begin testing LymphoStat-B ™ as a potential new treatment for autoimmune diseases. LymphoStat-B ™ is a monoclonal antibody that works by inactivating a natural immune stimulator in B cells. HGS is proceeding with a Phase 1 clinical trial for patients with lupus to determine the safety and dose for adult patients with this disease. In the future, the drug may be tested in patients with other autoimmune diseases, including ITP.

For more information see: http://www.hgsi.com/products/LSB.html

(We thank the vigilance of the readers of our discussion group for posting a reference to this information)

NEW REGISTRY FOR CHILDREN WITH ITP

The Intercontinental Childhood ITP Study Group (ICIS) has initiated two registries for children with ITP. Registry II follows bleeding patterns over time. It will further the understanding about the progression of ITP and help determine those children at high risk for serious bleeding. The Splenectomy Registry will track the responses, management and safety of splenectomy in children.

For more information see: http://www.unibas.ch/itpbasel/

If your child is between the ages of 4 months and 20 years and newly diagnosed or you are considering a splenectomy for your child, contact your physician about participating. The registry information will be a big help to researchers studying ITP.

FUN RUN TO BENEFIT PDSA

Help ITP research. We hope some of you plus your friends and family can join the runners on September 28 for a 5K run/walk at Mountwood Park in Parkersburg, WV. Chris Dower has organized this annual race and named PDSA as recipient of the contributions this year. We appreciate his thinking of us.

For more information see http://www.iplayoutside.com/Events/2002/09/4836.html or contact Chris at Christopher.Dower@pepsi.com

MEET OTHERS WITH ITP - NAME EXCHANGE PROGRAM

Would you like to meet others with ITP or find an ITP pen pal? Our Name Exchange Program is designed to help you. Twice a year, in January and July, we distribute the names, addresses, and e-mails of members who elect to participate to everyone on the list. We've heard from some of our members that they've met some great new friends this way.

We will be preparing the July list for distribution soon. If you want to be on the name exchange list you must be a member of PDSA (contribute $25 or more per year). If you are not a member, you can join at http://www.pdsa.org/joinus.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859.

If you are a member and would like to participate, just send us an e-mail giving us permission to use your name, address, and e-mail. If you are a member and are currently participating in our Name Exchange Program, you don't need to contact us.

Note: This is a closed, confidential list sent only to members who have given their permission to distribute the information and used only for personal contact.

HELP WITH HEALTH INSURANCE COMPLAINTS

Twenty-one states have ombudsmen who handle health insurance complaints for no charge. In Maryland, the service is under the attorney general's office. If you have an insurance reimbursement issue, check with your state offices to find information about this service in your area.

Or…there are firms that will assess your case and help you for a fee. See: http://www.healthcareadvocates.com/ or http://www.medconsumer.com/

IS MAINTENANCE THERAPY THE CHOICE FOR YOU?

If you have chronic ITP, you have treatment options other than splenectomy.
WinRho SDF®, Rho (D) Immune Globulin Intravenous (Human), is a medication specifically designed to treat ITP that may help you maintain platelet levels. Clinical studies have shown that many people respond well to WinRho SDF®—including one study that followed participants for over 2 years!1,2 Continuing therapy allowed patients more time for response and gave them time to improve on their own.2

WinRho SDF® has not been associated with some of the troublesome side effects sometimes encountered with long-term corticosteroid treatment. Compared with other IV therapies, it’s more convenient—the complete injection time is only 3 to 5 minutes approximately once a month.

Talk with your doctor to find out more about maintenance therapy and whether WinRho SDF® is right for you.

References:
1. Bussel JB, Graziano JN, Kimberly RP, Pahwa S, Aledort LM. Intravenous anti-D treatment of immune thrombocytopenic purpura: analysis of efficacy, toxicity, and mechanism of effect. Blood. 1991;77:1884-1893.

2. Cooper N, Woloski BMR, Fodero EM, et al. Does treatment with intermittent infusions of intravenous anti-D allow a proportion of adults with recently diagnosed immune thrombocytopenic purpura to avoid splenectomy? Blood. 2002;99:1922-1927.

Please go to www.nabi.com/products/WinRhoCurrent.pdf for prescribing information for WinRho SDF®.

WinRho SDF® is prepared from human plasma, and the potential to transmit infectious agents and theoretically, the Creutzfeldt-Jakob (CJD) agent cannot be totally eliminated. WinRho SDF® should not be given to persons who have had an anaphylactic or severe systemic reaction to human globulin, who are Rh-negative, or who have been splenectomized. WinRho SDF® may cause anaphylactic reactions in individuals who are deficient in IgA. Due to the presumed mechanism of action of WinRho SDF®, a decrease in hemoglobin is an expected adverse event. WinRho SDF® should therefore be used with caution in patients with hemoglobin <8 g/dL. Following administration of WinRho SDF®, Rho(D)-positive ITP patients should be monitored for signs and/or symptoms of intravascular hemolysis (IVH), clinically compromising anemia, and renal insufficiency. IVH-related complications that have been reported are death (four cases reported between May 1996 and April 1999), acute onset or exacerbation of anemia, acute onset or exacerbation of renal insufficiency and requirement for transfusion following WinRho SDF® administration. Infusion-related adverse events such as headache, chills, and fever may also occur.


For information on advertising in our e-news letter contact us at pdsa@pdsa.org.

This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org

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