A Clinical Trial of Rituximab

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Feature image from PHARMAFILE

I have recently become aware of a clinical trial that has started in my nation’s capital, Canberra.  That’s in Australia for anyone who didn’t know.

They said it has been studied as part of a treatment for ITP.  My ears pricked up.  How long has this been going on?  I have started to search around online and have found a lot of information, not only about the trials and treatments for ITP using this drug Rituximab, but also the drug itself.

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Articles – There is a lot of information, none of which I will try and summarise it all for you.  It is far too important for that… Instead, I have linked a few articles that you might like to read.  Most of them are over a year old already.

1.  American Society of Hematology, Rituximab promotes long term response for ITP.

2.  There is also an information sheet about the drug available from the Platelet Disorder Support Association, in their Treatments section.

3. Here is a page that is available to the public via a Norwegian University, from July 2011 (wow that is old!!)  Rituximab as Second Line Treatment for ITP.

I am very keen to learn all I can about this clinical trial and possibly a readily available drug therapy.  If anyone has been through the trial or a treatment program using Rituximab than please let us know how you went.

Look forward to hearing from you.

ITP Conference 2014

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 An International ITP conference will be held in a couple of days at Manhattan Beach, California.  The conference, aimed at patients, caregivers and the medical community will be held from July 11th to the 13th at Manhattan Beach Marriott Hotel.

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The 2014 ITP Conference will be held at Manhatten Beach, California

It will be the 14th Conference of it’s kind organised by the wonderful people at PDSA America, The Platelet Disorder Support Association.

The three day program will include authors, researchers and clinicians who all have a strong interest in helping ITP patients.  There will also be PDSA Medical Advisors who will present programs at the conference.  This conference provides a great opportunity to hear the latest information on ITP, meet others who are coping with ITP, and receive answers to any questions you might have. It is also a wonderful opportunity for carers of ITP children to meet other people caring for ITP patients.  There will also be a patient mixer on Friday evening and a special family-oriented party Saturday evening.

The Full Program for the Conference can be found on the PDSA website.

It will be a great opportunity, if you have a chance to go.

We are particularly interested in this presentation by Martin L. Rossman titled, If You Can Worry Yourself Sick, You May Be Able to Imagine Yourself Well?  Dr Martin Rossman is a pioneer in mind-body medicine. He is the founder of The Healing Mind, the co-founder of the Academy for Guided Imagery, a Clinical Faculty member at the University of California San Francisco Medical School, and an advisory board member of Dr. Andrew Weil’s Integrative Medicine Program at the University of Arizona. 

For the Complete List of Speakers who will be attending the Conference in 2014 Click Here. 

Registration

ITP conference 2014I believe there is still time for you to register if you are going to be in the area.  If you would like to Register for this years Conference simply follow the link.  

If you have any questions or require assistance while completing the registration form, please contact the PDSA office  at (301) 770-6636 or (877) 528-3538 or via email at pdsa@pdsa.org.

 

 

 

Are Vaccines Causing ITP?

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Feature image from ITP & ME

They say that there is no know cause for ITP.  All the information points to a combination of genetic susceptibility, life style, stress, immune function and whatever…  The list goes on.  If you have ITP then you are probably sick of hearing all the reasons why some people get ITP and other people don’t.

While researching an article for ITP and Me, I came across a very interesting pie graph that I wanted to share with my readers.  I was looking for information on PEOPLE LIVING WITH ITP for another article, and I found heaps.  I pulled it from a public presentation from a medical conference in 2012.  It was a pie graph that depicted the prevalence of Secondary ITP in relation to Primary ITP.

Look at the following image closely.  Notice there is a little black line that does not have any writing next to it.

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  • Primary ITP accounts for 80% of all cases of ITP.
  • SLE or Systemic Lupus erythematosus or Simply Lupus accounts for 5% of cases. 
  • APS or Antiphospholipid Syndrome or Hughes Syndrome or Sticky Blood accounts for 2% (ME!)
  • CVID or Common Variable Immunodeficiency accounts for 1 %
  • CLL or Chronic lymphocytic leukaemia accounts for 2 %
  • Evan’s or Evan’s Syndrome accounts for 2 %
  • ALPS of Autoimmune Lymphoproliferative Syndrome is responsible for 1 %
  • HIV or Human Immunodeficiency Virus accounts for 1 %
  • Hep C of Hepatitis C has about 2 % of ITP cases
  • H. Pylori or Helicobacter pylori is 1 %
  • Misc Systemic Infection which would be Miscellaneous Infections account for 2 % of ITP Cases

Then I found this …

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ITP & Pregnancy Research

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J Hematology?ýOE{A-4.aiThe following looked interesting for women thinking of having children while managing ITP.

The Japanese Society of Hematology have published a study of their finding from 1997 and 2013.  It is a medical Journal article that is available for purchase if you are interested in having children and want to read more.  I have copied the abstract below and the link that you would need to follow to purchase a copy for yourself to read.

Factors predictive of neonatal thrombocytopenia in pregnant women with immune thrombocytopenia.

Author information

 Abstract

To determine predictive factors for neonatal thrombocytopenia in deliveries with immune thrombocytopenia (ITP), we conducted a retrospective study at a tertiary hospital between 1997 and 2013. During this period, 30 women with ITP delivered 44 children. Neonatal thrombocytopenia (<100 × 109/L) at birth was observed in seven neonates; four of these cases were severe (<50 × 109/L). No cases were complicated by intracranial hemorrhage, and there was no neonatal mortality. Platelet counts at birth of neonates born to mothers, who had first been diagnosed with ITP during pregnancy were significantly higher than those born to mothers diagnosed with ITP before pregnancy.

There were significant correlations between neonatal platelet counts in the first and second siblings at birth (P = 0.015) and at nadir (P = 0.035). Platelet counts of neonates born vaginally were significantly more likely to decline after birth than those delivered by cesarean section (13/16 vs. 10/23, P = 0.024). In conclusion, diagnosis of ITP before pregnancy was significantly associated with neonatal thrombocytopenia, and the platelet count of an older sibling is a strong predictor for that of the next baby. The delivery mode may be an indicator of the timing of platelet count nadir after birth.

I hope it is helpful. 2014 Mar 13.

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We are always looking for new articles, research and findings to share with you guys.  If you come across anything that might be interesting to our readers, please don’t hesitate to share a link below.

History of ITP

Medical research 1950's

The history of ITP is closely tied to the story of the first demonstration of a blood plasma factor which causes platelet destruction. It was this blood plasma factor that was subsequently identified as an autoantibody. This initial dramatic experiment is part of the legend of ITP, and it is graphically described in a book by Lawrence K. Altman, the medical writer for the New York Times.

He described the story of Dr. William Harrington, whose career research on ITP began when he was a medical student in Boston in 1945 and cared for a young woman with ITP who died from hemorrhage. Five years later, when he was receiving his hematology training at Washington University in St. Louis, he was caring for another woman with severe bleeding, whose platelet count had not increased after splenectomy.

Dr. Harrington developed a theory that platelets were destroyed by a plasma factor, because he had also read reports that some mothers with ITP had given birth to babies with severe thrombocytopenia. To prove his theory, he worked with a young colleague on a summer Sunday afternoon in 1950. They removed a pint of blood from the patient and infused it into Dr. Harrington. The results were dramatic, as Dr. Harrington’s platelet count fell to nearly 0 and he developed purpura and petechiae. At that time, his colleagues insisted he remain in the hospital. It was 5 days before his platelet count recovered to normal. In spite of the clear dangers, these studies were repeated with 9 other ITP patients and several other volunteer physicians.

Harrington’s work is a milestone not only for ITP, but it was the first evidence for antibodies against one’s own tissues and formed the initial basis for our theories of autoimmune disease. These experiments could be described as heroic, and in the tradition of other scientists of many years ago who infected themselves with yellow fever, malaria, scarlet fever, and other dangerous diseases. However, these self-experiments may also be described as being foolish with unnecessary risks, according to current rules of clinical research. In the past 50 years, each experiment using human subjects must be reviewed by an impartial board of scientists. Each hospital and medical school has such a board, and they are all (in the U.S.) supervised by the National Institutes of Health. Dr. Harrington’s self-experimentation would not be allowed today. We can say that we are wiser in 1999 than he was in 1950, but his results still stand as landmark and legend in the story of ITP.

DNA Testing on Antibodies in the Blood

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Grose.

 

 

 

 

 

 

 

21st August 2013 – Did you know that there is a lot of research going on in Hospitals and Universities around the world at the moment, looking for treatments and cures for ITP?  I didn’t until I was asked to be a part of it.  We have not been forgotten my bleeding friendly friends.  There are lots of people researching auto immune disorders, anti bodies in blood, cells, viruses, causes and predispositions for ITP, TTP, Auto Immune Haemolotic Anemia and tones of other immune disorders.

Interesting?  I think so too.

And here I was thinking the whole world had forgotten us.

Want to hear something even more exciting than that?  Well, my mother and I are the first two people to provide our DNA from the same family to be tested.  Your welcome!!

So yes what you are looking at up there is my spit.  Saliva as the oncology nurses liked to call it.  Mine was full of salt and vinegar chips mum and I had smuggled in to the hospital to get us through the long wait.  The problem was that we could not drink any water for at least 30 mins before spitting in that tiny tube.  I was soooo thirsty.

Sound interesting.  Well if you are in Australia and would like to contribute your DNA to scientific research, send me an email.  Sound fun?  I think yes.

 

If you would like to contribute any information or perhaps your own story, please get in contact through itp.and.me.g@gmail.com or find us on Facebook through https://www.facebook.com/ItpandMe