Idiopathic Thrombocytopenic Purpura
What is Idiopathic Thrombocytopenic Purpura?
Idiopathic Thrombocytopenic Purpura is a condition in which the blood does not clot as quickly as it should due to a low number of platelets.
| Name | Description |
|---|---|
| Annabelle | Find a hematologist who is very familiar with ITP...not all hematologists/oncologists are. If you are seeing a doctor who says steroids and splenectomy are the only two treatments available, you know you're seeing someone who's about 10-15 years behind the curve. |
Last updated 8 Mar 2020, 08:10 AM
8 Mar 2020, 08:10 AM
Hi Everyone,
I wanted to share the following information with all of you which I hope will be beneficial:
Cepharanthine, a medicine from Japan has been approved by the Japanese Ministry of Health to treat thrombocytopenia.
According to a recent pharmacological report:
“Cepharanthine is a fascinating pharmacological agent with a complex set of physiological actions and an array of clinical benefits. To date, preclinical and clinical studies have provided compelling evidence for the potential uses of Cepharanthine in… idiopathic thrombocytopenic purpura.”
Clinical trials have shown that many ITP patients who were on a daily regimen of Cepharanthine had a significant elevation in platelet counts without any reported side effects.
Incredibly, a number of these patients were still experiencing elevated platelet counts up to 5 months after stopping Cepharanthine treatment.
Research has shown no difference in the results between patients who were treated with Cepharanthine alone and those who were treated with Cepharanthine in combination with Prednisolone (a man-made corticosteroid). As a result of Cepharanthine, many patients were able to either reduce or completely wean themselves off steroids.
In two studies involving pediatric ITP, children who were being administered Cepharanthine had their platelet levels fully restored to normal, even quicker than the standard costly platelet associated IgG treatment.
Last updated 11 Feb 2009, 01:46 PM
11 Feb 2009, 01:46 PM
Hi - I was treated with IVIG, Ratuxin, Prednisone and CellCept. It wasn't until they started the CellCept that any change occurred....keep the faith...there is also High Dose Cytoxan if everyting else fails. I know you posted a while ago, and I hope everything as worked out. Best of Luck to you.
23 Sep 2008, 03:55 PM
My son, 20, has tried started treatment with no positive results. Anyone have info on results and what comes next? Predinsone - no change WinRho - no change He starts IV immunoglobulin this week. Any info on that?
| Title | Description | Date | Link |
|---|---|---|---|
| UK ITP Support Association |
The ITP Support Association is a UK registered charity which aims to promote and improve the general welfare of patients, and the families of patients, with Immune (Idiopathic) Thrombocytopenic Purpura. |
03/20/2017 | |
| Platelet Disorder Support Association |
The Platelet Disorder Support Association is a non-profit corporation founded in August, 1998 to provide information, support, and encourage research about ITP and other platelet disorders. |
03/20/2017 |
Clinical Trials
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Last count, platelets were 71,000. I guess I'm one of the lucky ones, and my counts are still high, and I have not yet...
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Approved medicine in Japan to treat thrombocytopenia
Created by Felicity1980 | Last updated 8 Mar 2020, 08:10 AM
Treatments for Aquired amegakaryocytic thrombocytopenia ITP
Created by kcamiel | Last updated 11 Feb 2009, 01:46 PM
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