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Many of us have found that small changes in our lifestyle can help stabilize or even raise our platelet counts. Here are three things to consider adding to your New Year’s resolutions.
Listen to your body – Take heed when your body is telling you to rest or sit in the sun or go for a walk or take a hot bath. Follow your body’s request if you can and you know that will serve you well. Note: avoid the addictive desires like smoking or consuming alcohol.
Stay away from toxic environments – When you’re on the edge even small changes in the environment can affect your platelets. We suggest you stay away from smoke filled rooms and moldy and musty places. Avoid using harsh cleaning products. Stay away from areas sprayed with pesticides. Stay clear of gasoline or exhaust fumes. Avoid nail polish and hair dyes.
Relax – Reduce the stress in your life as much as you can. Breathe slowly. Walk slowly. Pay attention to circumstances that weigh heavy on your shoulders. Then lift them off.
If you have some platelet friendly lifestyle suggestions you’d like to share with others, just e-mail them to tips@pdsa.org. We’ll choose the best and publish them in later e-newsletters.
For some there is continued concern regarding anthrax exposure. According to the U.S. Department of Health and Human Services (DDHS), one of the options for continued prevention is a course of antibiotics plus 3 doses of anthrax vaccine. See http://www.hhs.gov/news/press/2001pres/20011218.html for the DDHS report.
Note that the anthrax vaccine has not been approved by the FDA. The vaccine package insert contains the following: “Persons receiving cortico-steroid therapy or other agents which would tend to depress the immune system may not be adequately immunized with the dosage schedule recommended.”
The National Vaccine Information Center has a very informative report on anthrax and other vaccines. See: http://www.909shot.com/Anthrax.htm. (The report also contains a history of biological warfare that I found fascinating. ed.)
The ITP abstracts from the American Society of Hematology meeting are now available at http://www.itppeople.com/articles/ashabs2001.htm . They provide a great review of the current state of ITP research. Warning: Have your medical dictionary site handy. There’s one at http://www.medicinenet.com.
Want to read more about the latest in ITP research?
NABI, distributors of WinRho, sponsored a corporate Friday session on December 7, 2001, titled “Third Annual Review of Immune Thromboctopenic Purpura.” Seven top ITP researchers presented their latest findings. Nearly a thousand hematologists attended the session. Now some of this information is available to you.
We have copies of the 30 page booklet that was distributed at the meeting. It contains a synopsis and slides of most of the presentations and some blank pages for notes. Note: This information is not a part of the abstracts mentioned above.
You can see the contents and order a copy of the booklet on-line at http://www.itppeople.com/jcopies.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859. The cost is $6.00 postage and handling if sent to the US or Canada, $9.00 if mailed elsewhere.
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
Contents:
In the last newsletter we mentioned some lifestyle suggestions that some people have found to stabilize or even raise their platelet count. Here are some additional suggestions from our readers.
1) Add more greens to your diet (Amy)
2) Try Reiki. It is total relaxation (Roger)
(Reiki is a type of energy healing. For more information see http://www.reiki.org )
3) I have set up my schedule so that I can take a nap every afternoon if I want. I don't always do it, but it's good to know that I can. (Karen)
4) During the flu season, I wash my hands more frequently than I would otherwise. (Karen)
5) I try to get exercise, but I have sort of a menu of possibilities, depending on how puny I feel on a given day. It's OK to skip it. It's OK to get to the parking lot and then turn around. (Karen)
6) I tend to be way too optimistic about how long something should take. I am working on deliberately over-estimating how much time I might need. (Karen)
If you have some platelet friendly lifestyle suggestions you’d like to share with others, e-mail them to tips@pdsa.org. We’ll choose the best and publish them in later e-newsletters.
The ITP Support Association in the UK reports that one of their members contacted them suggesting that his ITP was associated with exposure to phosphine. Phosphine can be a byproduct of the application of glyphosate, the ingredient in herbicides such as Roundup, Rodeo, Vision, Laso, Clear It, Wrangler, Laredo, Side-Kick, Erase, etc. Glyphosphates work by interfering with the plant enzyme growth process similar to the way antibiotics kill bacteria in humans.
These herbicides are widely used to control undergrowth in forests and on croplands before emergence of barley, wheat, oats, soybeans and corn, for pre-plow cleanup or spot control of perennial weeds in legumes and grasses, and for pasture renovation.
The World Health Organization lists thrombocytopenic purpura in its long list of possible effects following exposure to this phosphine.
If you suspect that your ITP was the result of exposure to phosphine or herbicides, send an e-mail to Shirley@itpsupport.org.uk.
For more information see http://www.rfu.org/ws76.htm.
Did you know that exposure to mercury may accelerate or worsen autoimmune disease? Did you know that some patients with primary immunodeficiency were misdiagnosed as having ITP?
These and many other interesting insights will be presented at the Third International Congress on Autoimmunity being held February 20-24 in Geneva Switzerland. The abstracts are on-line at www.kenes.com/autoim2002.
On Thursday there is a session on “Environmental Triggers of Autoimmune Disease”. On Friday there is a session on “Platelet Immunology and Endothelial Cells.” There are many other sessions and poster sessions. Like other medical abstracts, these can be difficult to understand. However, they are a good way to find the very latest information.
Would you like to write to others who have ITP?
Would you like to know if any other PDSA members live near you?
Our Name Exchange Program is available to members of PDSA. With your permission we will send your name, address, and e-mail to the other members who do the same. Your information will only be given to participating members.
Our next list will be sent the end of January. If you are not a member of PDSA, you can find out more information or join by going to http://www.pdsa.org/joinus.htm.
If you are a member and want to participate in the Name Exchange Program, just send us an e-mail to pdsa@pdsa.org. If you would like your name removed from the list, just send an e-mail. If you are currently on the list and want to continue, there is no need to contact us.
The “Platelet News”, our quarterly newsletters are a great source of information about ITP. Each issue contains from 12 to16 pages of helpful articles, treatment news, and physician input. Now you can get all four 2001 issues of “The Platelet News” for $14.00, postage and handling included.
See http://www.pdsa.org/newsletter.htm for issue contents and to order on-line. You can also order by sending a check to us at P.O. Box 61533, Potomac, MD 20859.
Want to read more about the latest in ITP research?
NABI, distributors of WinRho, sponsored a corporate Friday session on December 7, 2001, titled “Third Annual Review of Immune Thromboctopenic Purpura.” Seven top ITP researchers presented their latest findings. Nearly a thousand hematologists attended the session. Now some of this information is available to you.
We have copies of the 30 page booklet that was distributed at the meeting. It contains a synopsis and slides of most of the presentations and some blank pages for notes. Note: This information is not a part of the abstracts mentioned above.
You can see the contents and order a copy of the booklet on-line at http://www.itppeople.com/jcopies.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859. The cost is $6.00 postage and handling if sent to the US or Canada, $9.00 if mailed elsewhere.
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
Contents:
Here are more platelet friendly tips from our readers:
I have had a platelet disorder since I was nine and every day I take some vitamins, like vitamin C, which makes me feel much better and helps me not to get the flu very easily! (Camila, Brazil)
I have changed my eating. I eat sugarless foods, stay away from white flour items , use whole wheat, use soy items such as soy milk and soy cheese and various dietary supplements approved by my doctor. (George, USA)
After being treated for ITP for 6 months I quit prednisone, still with an average platelet count of 70 - 90, feeling exhausted, depressed and really miserable. Luckily, a work mate of mine suggested the Bodytalk system. After the third and final session, my count reached the 200 mark. I was overjoyed and really feeling well. www.bodytalksystem.com (Alex, Malta)
I take a sesame oil massage daily. I just rub warm sesame oil on my body before my shower. According to ayurvedic medicine, it helps clear toxins from your body. I find that it feels great and solves the winter dry skin problem. You can find out more about the process and buy massage-grade sesame oil at www.mapi.com. (Joan, USA)
If you have some platelet friendly lifestyle suggestions you’d like to share with others, e-mail them to tips@pdsa.org. We’ll choose the best and publish them in later e-newsletters.
We’ve collected all the data from our “Survey of Non-traditional Treatments in ITP” and are beginning to analyze it. There were 916 replies, a much larger sample than usually gathered for ITP research. We thank everyone who participated.
We have a wealth of data and it will take some time to analyze all of it. We plan to place preliminary results on our web site in April. This will be followed by successive updates as we analyze more aspects of the data.
We are finalizing the agenda for our conference. Here are some of the presentations. We think it is a great way to learn more about ITP and meet others the disease.
(This is a preliminary list. Presentations may be added or changed as the conference approaches)
The conference will be held at the San Diego Marriott, Mission Valley, from June 21 –23, 2002. To register, go to http://www.pdsa.org/conference.htm. Be sure to register early to get the registration discount.
“Eradicate H.pylori before treating ITP”. That’s the headline from the January 2002 issue of “Hem/Onc Today” and it is very good news for us.
The article discusses data from two Japanese studies presented at the 2001 American Society of Hematology meeting suggesting that eradicating Helicobacter pylori, a bacteria that is also associated with ulcers, can be a good treatment for ITP. In one study 12 of 19 patients had significant increase in platelet counts. In another study 6 of 14 had a good or complete response.
The connection between H.pylori and ITP was first reported in a study by Emilia, et al. at last year’s ASH conference, in the journal “Blood”, vol. 97, and in the Winter, 2001 edition of PDSA’s “The Platelet News”. Since then other researchers in the US and other countries have conducted studies to replicate the results. While not all researchers have found the success reported in these Japanese studies, H.pylori testing is becoming more widely used and accepted when diagnosing and treating ITP.
For more information see the ASH meeting abstracts at http://www.itppeople.com/abstracts.htm. To order your copy of The Platelet News – Winter 2001, go to http://www.pdsa.org/newsletter.htm.
According to an article in the January 22, 2002, New York Times, inflammation plays a more significant role in diseases than previously reported. Scientists report severe blockages cause at most three out of ten heart attacks. The remainder may be triggered by inflammation.
Inflammation is linked to diseases associated with aging such as atherosclerosis, diabetes, Alzheimer’s disease and osteoporosis. It is implicated in asthma, cirrhosis of the liver, some bowel disorders, psoriasis, meningitis, cystic fibrosis, and cancer. Inflammation is also the cause of crippling joints in rheumatoid arthritis and nerve cell destruction in multiple sclerosis (autoimmune diseases like ITP).
Scientists can measure C-reactive protein C.R.P, a marker of inflammatory activity. Two studies have demonstrated that the higher a person’s C-reactive protein level, the greater the risk of heart attack or stroke. Diet, exercise, and smoking cessation can lower C.R.P. levels.
It is important to find the source of inflammation. In asthma, the inflammation is caused by allergens like dust mites or cat dander. In atherosclerosis, inflammation may be caused by oxidized fat droplets. Some experts speculate that infections caused by H.pylori, Herpes Simplex, cytomegalovirus and other infections agents may play an indirect role and heighten the body’s inflammatory response.
(Note that prednisone, widely prescribed for ITP, is an anti-inflammatory drug)
For more information see on the NY Times aricle see: http://www.nytimes.com/2002/01/22/health/anatomy/22INFL.html
(Thanks to John for sending this information)
The Winter 2001 edition of “The Platelet News” contains an article entitled “Splenectomy and Heart Attacks – An Interesting Link”. The Spring 2001 edition of “The Platelet News” contains an article entitled “Infections and ITP.” Go to http://www.pdsa.org/newsletter.htm to order back issues of “The Platelet News.”
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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If you have any choice on the bon-bons that may be coming your way on Thursday, here’s our recommendation: good quality dark chocolate.
In the February issue of his Self Healing newsletter Dr. Andrew Weil reports, “Good quality dark chocolate has relatively little sugar, is richer in protective antioxidants, and is made with cocoa butter, not unhealthy fats such as palm or coconut oils.…Chocolate is not just a food, it is a drug. It contains small amounts of caffeine but more of another stimulant called theobromine…which can boost serotonin and endorphin levels in the brain that improve mood and enhance pleasure…”
His advice: 1) Stick to plain dark chocolate (sugar is not listed first in the ingredients list), 2) Treat yourself occasionally 3) Notice the effects.
We agree.
Have a Happy Valentine’s Day!
In the last e-news we reported the topics that will be presented at our ITP Conference 2002. Here are some additions. The complete topic list and the speaker bios are now on our web site at http://www.pdsa.org/conference.htm.
“Oxidative Stress and ITP: Implications for a Less Aggressive Therapy.” - Enrique González Vergara
Enrique González Vergara, PhD, graduated from the University of California San Diego USA, then went back to his native country México to be a professor at the Benemérita Universidad Autónoma de Puebla in Puebla México. He is currently active in research and teaching. He has researched and published extensively on many topics involving inflammation and oxidative stress. In 1999 he presented a paper “Ascorbic Acid, Oxidative Stress and an Alternative Therapy for ITP” at the International Symposium for Oxidative Stress in Kyoto, Japan. His wife has had ITP for 25 years. They both have three healthy children, and now she is doing well.
"The Patients Speak: Results from the Survey of Non-Traditional Treatments in ITP” – Joan Young
Joan Young is the founder and president of the Platelet Disorder Support Association. She was diagnosed with ITP in 1992 at the age of 46. After seven treatments failed to provide a sustained safe count, she turned to complementary medicine. Her platelets have been over 200,000 for 6 years. She attributes her good health to herbs, diet, energy treatments and many other small and large lifestyle changes.
Be sure to register for our conference by March 31 to receive the$10.00 registration discount. You can register on-line at http://www.pdsa.org/confregon.htm or by sending a check to us at P.O. Box 61533, Potomac, MD 20859. The cost is $75 for non-members and $65 for members. For membership information go to http://www.pdsa.org/joinus.htm
Many drugs adversely affect your cholesterol lipid levels (triglyceride, HDL, LDL). A long list in in Drug and Ther Perspect 17(23):11-15, 2001. For people with ITP, the most relevant drugs on the list are Danazol, prednisone and other immunosuppressive drugs.
Danazol
“Danazol, which is primarily used for the treatment of endometriosis, increases LDL-cholesterol levels by up to 40% and decreases HDL-cholesterol levels by approximately 50%. These effects are not dose dependent and serum lipids rapidly return to baseline levels, usually within 8 weeks of stopping therapy.[1] “ Danazol: raises LDL 10-40%, lowers HDL 50%, no change in total cholesterol or triglycerides
Immunosuppressants
“After successful transplantation surgery, patients show high cardiovascular morbidity and mortality because of the accumulation of risk factors such as hypertension and hyperlipidaemia. This hyperlipidaemia may be induced by immunosuppressive therapy following transplantation, as all lipid levels are increased. The magnitude of these effects depends on the combination of immunosuppressants and the gender of the patient; the effects seem to be larger in women than in men.[1] Combinations with cyclosporin tend to have the greatest effects; however, low-dose cyclosporin (1.25 mg/kg) as used in the treatment of psoriasis does not significantly affect the lipid profile.[1]
In contrast, combinations with prednisolone (i.e. azathioprine plus prednisone) are associated with the smallest increases.[1] Tacrolimus does not affect total or LDL-cholesterol levels and shows a smaller effect than cyclosporin on triglyceride levels (10 to 15% increase); the effects on HDL-cholesterol levels are similar to cyclosporin. Mycophenolate mofetil, one of the newer immunosuppressive agents, does not adversely affect the lipid profile. However, sirolimus (rapamycin) seems to have an even more pronounced effect on both cholesterol and triglyceride levels than does cyclosporine.”
Immunosuppressive Drugs: raise total cholesterol 10-40%, raise LDL 0-50%, raise HDL, 0-90%, raise triglycerides 0-70%.
.[1] Mantel-Teeuwisse AK, Kloosterman JME, Maitland-van der Zee, AH, et al. Drug-induced lipid changes: a review of the unintended effects of some commonly used drugs on serum lipid levels. Drug Saf 2001, 24: 443-56
We found that the Fall issue of the newsletter mailed September 9, was not received by many of our members and those who received their newsletter found their copies yellow, brittle, or smudged. Our best guess is that they were over-cooked in Post Office’s attempt to keep our mail safe. We’ve notified the Post Office and will look into sending our newsletters by a speedier method.
In the meantime, if you are a member and would like another copy of the Fall newsletter, just send us an e-mail and we’ll send one to you.
Here are more platelet friendly tips from our readers:
“My daughter, Camila, has had ITP for almost a year (she is two years old now). We have found that by including as much fish as possible into her regular diet, her platelet counts have stabilized for months.”
(Alexandra, Miami).
“I've had ITP for over 20 years and find that the fresh juice extracted from a pineapple taken each day for a period of 1-2 weeks increases my platelet count tenfold. Yes - I do mean tenfold!! On two occasions in the past year, my count has gone from 10 to 120+ (which for me is good) in the space of only one week.
“I originally found out about the pineapple juice by reading a letter in a medical journal from a pharmacist whose wife had ITP and who had been told about this treatment whilst on holiday in Africa. She subsequently tried it, and it worked for her so I thought there was no harm in trying it myself. This simple remedy has kept my levels relatively stable for over 18 years. I am not sure if it works as well with packaged juice as I've always made a point of making an extract from the fresh fruit - or actually just eating a pineapple a day.”
(Emine, London)
If you have some platelet friendly lifestyle suggestions you’d like to share with others, e-mail them to tips@pdsa.org. We’ll choose the best and publish them in later e-newsletters.
IgG America is a national specialty pharmacy organization that provides immune globulin services in the home setting. IgG America can arrange services during the day, evening, and/or weekend. Not only is it more convenient then having infusions in a physician’s office or outpatient center, it is usually less expensive. Services provided include immune globulin, supplies, pump/IV pole, and nursing services required to administer the immune globulin. The nurse stays the entire duration of the treatment and follows a comprehensive administration protocol. If you would like more information on IgG America’s services or would like to inquire if your health insurance would cover home immune globulin treatments, please call (toll free) 1-877-674-9700 or visit our website at www.iggamerica.com.
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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The schedule for our ITP Conference 2002 is set. The topics are listed below.
You can see the schedule detail, speaker biographies and other conference information at http://www.pdsa.org/conference.htm. The conference will be held at the San Diego Marriott Mission Valley in San Diego, CA, from June 21 – 23. 2002. Be sure to register before March 31 to receive your registration discount.
Friday, June 21, 2002
Saturday, June 22, 2002
Sunday, June 23, 2002
Did you know that we absorb 60 percent of the substances we put on our skin? That means the make-up, deodorant, hair dye, and lotion we put on our bodies all reach our blood stream. Unfortunately, these products can contain substances that can harm or aggravate our immune systems. The Fair Packaging and Labeling Act requires that the product ingredients are listed on the packaging in descending order of quantity. Here are a few ingredients to avoid:
Diethanolamine (DEA) /Triethanolamine (TEA): Found in commercial shampoos as a wetting agent. Combines with nitrosamines, potent carcinogens.
Imidazolidinyl Urea; 2-bromo-2-nitropopane-1; 3-diol; diazolidinyl urea; DMDM hydantoin; Quaternium-15: Synthetic preservatives that can release formaldehyde into products. Formaldyhyde can damage your DNA.
Mineral oil and propylene glycol: Petroleum derivatives that can cause allergic reactions
Others to avoid: methyl and propyl paraben (p-hydorxybenzoate or PHB); lanolin; talc; silica; sodium PCA (NAPCA); synthetic hair dyes; synthetic fragrances PVP-VA/copolymers
(Information taken from “Kinder, Gentler Body Care” Co-op America’s Real Money Newsletter, January/February 2002)
Congress has approved the 2002 National Institutes of Health (NIH) budget of $22.89 billion dollars, a 13.9 percent increase over last year. The budget includes $2.58 billion for the National Heart, Lung, and Blood Institute (NHLBI), a 12.1 percent increase over last year.
The American Society of Hematology worked with the appropriations committee to include language in the final report that promotes and furthers interest in hematology. Of special interest to those with ITP is “the establishment of a clinical research network, which will enable patients with non-malignant blood disorders to participate in high-quality clinical network protocols while at the same time attracting and training clinicians in hematology.” The targeted non-malignant blood disorders include ITP.
PDSA is following the progress of the clinical trials network and will report the milestones to our readers. We will have more information on this network in our upcoming winter newsletter.
We are finalizing the Winter edition of our newsletter, “The Platelet News”. This issue will be our largest edition to date at 20 pages. It will go to the printer March 4 and be sent flat instead of folded like our previous issues. We hope this expedites delivery and avoids the problems we experienced with our Fall issue.
It will contain the following articles:
“Hepatitis C infection related thrombocytopenia might masquerade as ITP” by Sandeep Rajan, MD
“Medicines, Foods, and Herbal Remedies That Can Cause a Low Platelet Count” by James N. George, MD and George R. Buchanan, MD
Plus an update on the latest treatment information from the December 2001 American Society of Hematology meeting, abstracts and other facts on the effects of mercury on autoimmune diseases, news from the NIH, answers to patient questions, and much more.
The Platelet News is mailed quarterly to our members. If you are not a member and would like to receive our newsletter, you can join on-line at http://www.pdsa.org/joinus.htm or send a check for $25 or more to PDSA, P.O. Box 61533, Potomac, MD 20859.
Errata: In our last e-news we erroneously stated that our Fall newsletter was mailed on September 9. The Fall newsletter was mailed on December 1.
IgG America is a national specialty pharmacy organization that provides immune globulin services in the home setting. IgG America can arrange services during the day, evening, and/or weekend. Not only is it more convenient then having infusions in a physician’s office or outpatient center, it is usually less expensive. Services provided include immune globulin, supplies, pump/IV pole, and nursing services required to administer the immune globulin. The nurse stays the entire duration of the treatment and follows a comprehensive administration protocol. If you would like more information on IgG America’s services or would like to inquire if your health insurance would cover home immune globulin treatments, please call (toll free) 1-877-674-9700 or visit our website at www.iggamerica.com.
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
Contents:
Many people think ‘green’ as St. Patrick’s Day nears. In addition to contemplating a sip of green beer or slipping on those green socks, we suggest you drink some green tea.
Green tea has a higher concentration of polyphenols than black tea. Some studies suggest polyphenols are powerful antioxidants that can protect you from some cancers and tooth decay, among other health benefits. Green tea has less caffeine than black tea and contains l-theanine, an amino acid that may moderate the caffeine to produce a state of alert relaxation. For more information see www.tenren.com.
We are fortunate to have so many people searching for ITP information. On Feb. 24 Maura posted a note to the discussion group mentioning articles in “Environmental Health Perspectives, vol. 107, suppl.5, Oct. 1999. We took advantage of our location near the NIH to visit the National Library of Medicine and find the articles.
The supplement contains over 100 pages describing research reported at the “Workshop on Linking Environmental Agents and Autoimmune Diseases” sponsored by the National Institute of Environmental Health held September 1-3, 1998 in North Carolina.
While there were no articles specific to ITP, there were many facts that could be helpful to us. Specifically, one article mentions mercury, iodine, vinyl chloride, canavanine, organic solvents, silica, l-tryptophan, particulates, ultraviolet radiation and ozone in association with autoimmune diseases.
You can read the abstracts at http://ehpnet1.niehs.nih.gov/docs/1999/suppl-5/toc.html. If your local library or medical school has a subscription to the journal you can read the full text articles on-line. We copied four of the articles and will summarize the most relevant points for our upcoming newsletters.
IN THE UK
The ITP Support Association in the UK will hold their ITP convention on Saturday, April 6 at Hinchingbrooke House, Huntingdon, Cambridgeshire, UK. The convention will feature various talks from noted ITP physicians from the US and UK. For more information go to http://www.itpsupport.org.uk or write to Shirley@itpsupport.org.uk.
Representatives from PDSA are planning to attend and will report on any interesting news from that conference.
IN SAN DIEGO, CA
We are pleased to announce that The DAISY Foundation, Nabi, and Amgen have pledged their support for our ITP Conference 2002 scheduled June 21-23 in San Diego, CA. We reply on our corporate and foundation sponsors to keep the conference affordable and are very grateful for their assistance.
We expect to add more conference sponsors as the conference date approaches.
For more information on our conference and to register, see http://www.pdsa.org/conference.htm.
Our winter newsletter will be mailed on Wednesday, March 13. This newsletter is 20 pages, our largest ever. This edition of our newsletter will be mailed flat directly from our printer. We hope this helps it arrive in your mailbox in good condition. Keep us informed.
Our newsletter is sent to our members. To become a member, go to http://www.pdsa.org/joinus.htm.
The winter edition will be mailed to all current members and those who become members before March 21. If you’re not a member, consider joining today. PDSA relies on member contributions to fund our programs. We appreciate your support.
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
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
Contents:
Spring is a great time to clean out the toxins your body has accumulated during the winter. According to Ayurvedic medicine, a long-standing system of medicine from India, toxins, called ama, accumulate in your body from incomplete digestion and exposure to environmental toxins such as pesticides and household chemicals. If you wake up in the morning and your tongue is coated, if you feel dull and sleepy after eating, if your mind is foggy, or if you have a heavy feeling in your body you may have a build-up of toxins. These toxins can manifest in a variety of symptoms such as fatigue, joint pain, frequent colds, and other ailments.
There are many ways to rid your body of ama. One way is to eat an ama-reducing diet of warm, freshly-cooked whole foods. Cooked leafy greens such as kale and chard are very good at helping the body detoxify.
The information in this article was taken from “Taking Care of Toxins” in the February 2002 special edition of the “Total Health News”. You can view the entire article on-line at http://www.mapi.com
We scan each issue of the journal “blood” for platelet articles that might interest our readers. In the March 15 issue there were three…a record. You can read the text of the abstracts free or purchase the articles at http://www.bloodjournal.org/. Just enter the volume number and beginning page into the search boxes.
Using Anti-D to avoid Splenectomy
Twenty-eight non-splenectomized ITP patients were given repeated doses of Anti-D (WinRho) to determine if the treatment could help these patients sufficiently stabilize their counts and avoid splenectomy. The authors concluded that Anti-D was an effective maintenance treatment for two-thirds of the patients who failed an initial course of steroids and allowed 40% of the adults avoid splenectomy and achieve stable platelet counts off all therapy. Vol. 99 p. 1922.
Vitamin A and Thrombocytopenia
An infant, given 62,000 IU/day of vitamin A, 41 times the recommended daily allowance in the first year of life, developed severe anemia and thrombocytopenia. When the vitamin A was interrupted the infant recovered. The authors investigated the interaction between the high dose of vitamin A and bone marrow and concluded that the resultant anemia and thrombocytopenia were due to the direct effect of the molecule on the bone marrow components. Vol. 99 p. 2017.
Abciximab and Thrombocytopenia
Abciximab, a monoclonal antibody often given to heart patients to prevent blood clots, causes thrombocytopenia in 1% - 2% of the patients. The authors found that the patients who developed thrombocytopenia had existing antibodies that made them more susceptible. They concluded that it may be possible to identify patients who were at risk by screening for antibodies that recognize 7E3-coated platelets. Vol. 00 p. 2054.
Thinking about coming to our ITP conference in San Diego, June 21-23, 2002?
We found great discount airline tickets at www.orbitz.com. Other travel sites are www.trip.com, www.travelocity.com and www.expedia.com. Or try southwest airlines www.southwest.com, known for their low rates.
You can get discount tickets to some of San Diego’s finest attractions at
http://www.a-zsandiegoattractions.com/.
Here’s what others are saying about this great city.
"One of the top 10 cities in the United States" - Conde Nast Traveler Magazine
"One of the top 12 places to vacation in North America" - Money Magazine
"The most family-friendly city in the southwest U.S." - Family Fun Magazine
"The Newest Cultural Mecca in the United States" - travelocity.com
For more information on our conference and to register go to http://www.pdsa.org/conference.htm. Register before April 15 and save $10.
Parsley is considered by many to be good for the liver, an organ sometimes implicated in ITP. I juice two bunches of parsley at a time and drink a mug of juice a day. Sometimes I mix it with other fruits or vegetables. Peter (PA)
Remember to add something fun to do every day. Practice being creative every day. Amy (NJ)
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
Contents:
The March 28, 2002 edition of the New England Journal of Medicine contains a 21 page review article on ITP by Douglas Cines, M.D. and Victor Blanchette, M.B., B.Chir. It includes sections on physiology, genetics, measuring platelet antibodies, initial and subsequent disease management, splenectomy, approaches to chronic cases, ITP and pregnancy, and other topics.
Our favorite quote is in “The Patient’s Perspective” section: ”The Internet has become both a source of quixotic remedies and an important resource enabling patients to find expert care and to receive support from other patients.”
We have ordered 100 copies of the article and will make them available for $5.00 shipping and handling as soon as we receive them. We thank Dr. Cines and the University of Pennsylvania for helping us with this.
You can download the ITP review article for $10 at www.nejm.org.
The American Autoimmune Related Diseases Association, Inc. (AARDA) is leading an initiative to secure additional NIH funding for autoimmune diseases. This includes ITP. In 2001, congress passed legislation requesting that the NIH produce a national strategic plan for autoimmune research. According to NIH estimates the plan will require funding of $400 million in addition to the $456 million already allocated to autoimmune research.
AARDA is organizing a major lobbying effort to help assure this additional research money becomes available. PDSA is a member of the National Coalition of Autoimmune Patient Groups participating in the lobbying effort.
You can help, too, by writing or talking to your legislators. Visit AARDA’s web site at http://www.aarda.org for more information.
The alternative health panel, commissioned by President Bill Clinton two years ago and composed of 20 members from various medical disciplines, finalized its report in mid March. The verdict: “spend more money on research into complementary and alternative medicine (CAM), better educate and regulate practitioners of these therapies, publicize the risks of certain CAM treatments and expand insurance coverage to make CAM affordable to more Americans.”
CAM continues to be controversial and two of the panel’s members issued dissenting reports.
Washington Post, March 19, 2002.
Note: Dr. Stephen Groft, the executive director of the panel, is on leave from his post as the director of the Office of Rare Diseases at the NIH. He is familiar with ITP and some of our CAM success stories.
The FDA issued a voluntary recall of two lots of Bayer Corporation’s IVIg product, Gamimune, due to a discovery of product tampering. Bayer initiated a voluntary recall of lots 648X078, recalled February 1 and lot 648X062, recalled March 14, 2002. Bayer indicated that the tampering problem is limited to those recalled lots.
Note that there is no cause for alarm with using IVIg in general and that Bayer is doing everything it can to assure the quality of its product.
For more information go to http://www.fda.gov/cber/infosheets/bayigiv032002.htm
Additional Fax Number – We found that some people were having trouble reaching us by fax. We have an additional fax number, (301) 294-3125. We will continue to receive faxes at 1-87-PLATELET, (301) 294-5967.
UK Conference – Joan and Buzz attended the ITP Support Association’s Conference in the UK on April 6. It was a great experience to meet Shirley Watson, their founder and chief administrator, talk to some of our UK members, and learn about the similarities and differences in treatment philosophies between the UK and the US. We’ll publish a report in our next regular newsletter.
ITP Conference in San Diego – Ron Strom, one of our volunteers, created a great conference poster for our upcoming ITP Conference in San Diego. We plan to distribute these to hospitals and large hematology practices in Southern California and other areas. If you live near a hospital or are a patient at a large hematology practice and would like to help us by distributing a poster, just reply to this e-mail with your name and mailing address or the name and address of the hospital or medical practice and we’ll send a poster.
The ITP Conference 2002 will be held June 21-23 at the San Diego Marriott Mission Valley, San Diego, CA. For more information and to register go to http:www.pdsa.org/conference.htm.
If you have chronic ITP, you may be receiving IVIG that may require 4 to 6 hours administer.
There is an alternative treatment with more convenient dosing. WinRho SDF®, Rho (D) Immune Globulin Intravenous (Human), is a medication specifically designed to treat ITP that may help you maintain platelet levels. With WinRho SDF®, your treatment would take only 3 to 5 minutes per injection. That could give you more time to get out and enjoy the things you love doing.
Talk with your doctor to find out if WinRho SDF® is right for you.
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.
IgG America is a national specialty pharmacy organization that provides immune globulin/WinRho SDF services in the home setting. IgG America can arrange services during the day, evening, and/or weekend. Not only is it more convenient then having infusions in a physician’s office or outpatient center, it is usually less expensive. Services provided include immune globulin, supplies, pump/IV pole, and nursing services required to administer the immune globulin. The nurse stays the entire duration of the treatment and follows a comprehensive administration protocol. If you would like more information on IgG America’s services or would like to inquire if your health insurance would cover home immune globulin treatments, please call (toll free) 1-877-674-9700 or visit our website at www.iggamerica.com.
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
Contents:
From our e-mails and survey responses we know that many of our readers find a spiritual connection helpful in addressing their ITP. The Center for the Study of Religion/Spirituality and Health - Duke University (http://garcia.geri.duke.edu/religion) has published a new web site that illustrates research on the subject.
Other spirituality web sites include:
The George Washington Institute for Spirituality and Health - George Washington University
http://www.gwish.org
IDEC Pharmaceutical Company plans to submit an Investigational New Drug application (IND) to the Food and Drug Administration (FDA) for Rituxan as a treatment for ITP. An IND is a request for authorization from the FDA to administer an investigational drug or biological product to humans. Rituxan was the first monoclonal antibody approved for the treatment of non-Hodgkin's lymphoma. There have been several small clinical trials where Rituxan has demonstrated a potential for helping patients with ITP. With the approval of an IND for ITP, IDEC and their partner Genentech can conduct a large Phase 3 clinical trial for ITP patients.
Related sites:
RepliGen, a Massachusetts company, has initiated a phase 1/2 open label, dose escalating clinical trial to evaluate the safety and efficacy of CTLA4-Ig in patients with refractory ITP in the United Kingdom. CTLA4-Ig is a genetically engineered human antibody that temporarily disables T-cells. RepliGen chose ITP for its clinical trail because the treatment's efficacy is easily measured by a platelet count. The clinical trial is being conducted by Dr. Drew Proven at the Royal London Hospital.
For more information see;
http://www.repligen.com/Research/CTLA4/HomePage.html
We're looking for an ITP parent and ITP teen to round out the people for our patient panel for our ITP Conference 2002. If you have an interesting story you feel would help others, e-mail a synopsis to pdsa@pdsa.org. The patient panel is scheduled for Sunday morning, June 23, 2002. Patient panel members receive a complementary conference registration. (If you've already registered, we'll send a refund)
Our ITP Conference 2002 will be held June 21 - 23, 2002 in San Diego, CA. For more information go to http://www.pdsa.org/conference.htm.
We are pleased to announce that the United Way of the National Capital Area has approved our application. Our United Way/Combined Federal Campaign number is 9236. PDSA relies on donations to continue and expand our work. We value your contributions. Please consider designating PDSA if you donate through these organizations.
If you are not in the area serviced by the United Way of the National Capital Area you can still designate PDSA as a recipient of your funds. Just place our organization's name and address in the designated spot. The United Way will then contact us for our non-profit information. We've received United Way contributions from the United Way Capital Area (Austin, TX), the United Way Treasure Valley (Boise, ID), and the United Way California Capital Area (Sacramento, CA).
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
Contents:
There's only one week left to take advantage of the $109.00 per night special room rate at our conference hotel, the San Diego Marriott Mission Valley. To book your room call the Marriott reservation lines at 800-228-9290 or 800-842-5329.
We will accept conference reservations until June 18. If you've decided to attend, please register ASAP to help us avoid a last minute administrative crunch.
For more conference information and to register go to http://www.pdsa.org/conference.htm.
Just added - the conference abstracts at http://www.pdsa.org/confabs2002.htm
Now in stock at PDSA.
The March 2002 issue of "Blood Reviews" contains 80 pages of ITP information. The sections include Pathophysiology (5 articles), Clinical management of pediatric ITP (4 articles), Clinical management of adult ITP prior to Splenectomy, (5 articles), Clinical management of adult ITP after splenectomy, (4 articles), Other immune thrombocytopenias (3 articles including "Alloimmune thrombocytopenia of the fetus and the newborn") For a complete list of the articles see: http://www.itppeople.com/blrevlist.htm
The cost is $7.00 shipping and handling to the US and Canada, $10.00 elsewhere. To order, go to http://www.itppeople.com/jcopies.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859.
The journal copies were donated by Nabi. We appreciate Nabi's continued support in assisting our education program.
Senator Barbara Boxer (D-CA) introduced a bill to increase research on autoimmune diseases in women.
Autoimmune diseases are the fourth largest cause of disability among women in the United States. There are more than 80 illnesses classified as autoimmune diseases, including ITP.
The Women's Autoimmune Diseases Research and Prevention Act, S. 2234, would direct the Department of Health and Human Services' Office on Women's Health to support and coordinate research and develop methods to prevent these diseases in women. ITP is three times more prevalent in adult women than men.
For more information go to: http://boxer.senate.gov/newsroom/200204/20020425_health.html
Danazol may increase the risk of ovarian cancer according to a study done at the University of Pittsburgh Graduate School of Public Health and presented at the 33rd Annual Meeting of the Society of Gynecologic Oncologists. The risk increased with longer duration of Danazol use. Women who used Danazol for 4 or more months were 4 times more likely to develop ovarian cancer than those who never used Danazol.
Danazol is frequently used to treat endometriosis and occasionally used to treat ITP.
For more information see www.hemonctoday.com and http://www.itppeople.com/danazol.htm
Breath testing for H.pylori was as effective as endoscopy according to results of a trial published in the April issue of the British Medical Journal. The breath test is more comfortable and substantially less expensive than endoscopy. H.pylori is a bacteria linked to stomach ulcers and recently to thrombocytopenia.
Researchers at the December, 2001, American Society of Hematology meeting recommended that all patients with ITP be tested for H.pylori since low platelets can be associated with an H.pylori infection and treating the H.pylori has raised the platelet count in some patients.
For more information see:
If you have chronic ITP, splenectomy (surgical removal of the spleen) is not your only option. While this procedure may work well for many people initially, as many as 40% of adults do not respond to splenectomy or relapse following the procedure.1 If splenectomy fails to achieve remission, treatment options for ITP may be limited. Additionally, splenectomized people are at an increased lifelong risk of serious infection.2
WinRho SDF®, Rho (D) Immune Globulin Intravenous (Human) is a medication specifically designed to treat ITP that may help you maintain platelet levels. Therapy with WinRho SDF® is less invasive than splenectomy, and clinical studies have shown that many people respond well to WinRho SDF®—including one study that followed participants for over 2 years!3,4 The investigators concluded that continuing therapy may allow patients more time for response and may give them time to improve on their own.4
Talk with your doctor to find out about options other than splenectomy and whether WinRho SDF® is right for you.
1. Cines DB, Blanchette VS. Immune thrombocytopenic purpura. N Engl J Med. 2002;346:995-1008.
2. Waghorn DJ. Overwhelming infection in asplenic patients: current best practice preventive measures are not being followed. J Clin Pathol. 2001;54:214-218.
3. 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.
4. 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
Platelet Disorder Support Association
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440.746.9003 | pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.
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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.