Category Archives: News & Announcements

Two Patients Starting Individual One-year Trials of Therapeutic Plasma Exchange

I am pleased to announce that as of this past Friday, there are now two patients who have started one-year, individual trials of Therapeutic Plasma Exchange (TPE) using the protocol that my research group developed as a starting point for clinicians planning individual trials of TPE.  Note that this is not a formal study but is designed so that we may be able to pool the patient data as part of a case series after the initial one-year trial period.  You can view these Guidelines here in both US and A4 formats: TPE Guidelines – US  TPE Guidelines – A4

For HIPAA privacy reasons, I can’t tell you much about the patients.  What I can tell you is that both patients are relatively early stage, one is in Europe and the other is in the US, and both have rare scleroderma-specific antibodies.  One has U3-RNP antibodies, the rare, third antibody associated with diffuse systemic scleroderma.  Most patients with diffuse systemic scleroderma have either Scl-70 or RNA Polymerase III antibodies.  There is one published case report where TPE was used to treat a patient with U3-RNP antibodies.  The other patient has Th/To antibodies, the rare, second antibody associated with limited diffuse scleroderma.  Most patients with limited systemic scleroderma have centromere antibodies.  There are no published reports of anyone trying TPE to treat a scleroderma patient with this antibody.

Since our comprehensive review of the use of TPE as a treatment for systemic scleroderma has not yet been published (in press), you may wonder how these two patients were able to arrange to start these clearly experimental trials.  It starts with very educated and assertive patients.  Both patients read everything on this website about TPE and the research behind this treatment approach.  They then contacted me with questions about the procedure.  Once they reached the decision that this was something they were interested in considering, the next “challenge” was getting their clinicians to also become educated on TPE and ultimately convinced that this made sense to consider for them.  In the case of the European patient, that was relatively easy since TPE is much more commonly used there than in the US.  As a result, the clinician didn’t have the typical (mostly incorrect) concerns about issues such as safety.  In the case of the US patient, the clinician was very open to learning about TPE and the research behind it and was ultimately willing to move forward to see if this could be done.  In each of these two cases, a member of the Scleroderma Education Project Medical Advisory Board and I participated in video conference calls with both the patient and clinician to answer any remaining questions/concerns.

The final challenge was cost. Here we lucked out a bit.  The patient in Europe is going to self-pay for the first year (TPE is much cheaper in Europe than it is here) and if successful, work towards getting insurance coverage to continue long-term TPE.  In the case of the US patient, his/her company is self-insured and willing to support this one-year trial.

I am talking with both patients about their giving periodic, anonymous updates over the next year about their experiences with TPE (good or bad) through this website.  I will let you know if I am able to work this out.

Share

Therapeutic Plasma Exchange Review Paper Accepted for Publication!

I am very happy to announce that our review paper titled “Therapeutic Plasma Exchange for the Treatment of Systemic Sclerosis: A Comprehensive Review and Analysis” was just accepted for publication by the “Journal of Scleroderma and Related Disorders”.  JSRD is the top research journal in this field and is read by most researchers and clinicians… Continue Reading

Share

The Scleroderma Education Project is Expanding Our Mission

Our Mission: Education Since 1995 my focus has been on providing comprehensive, up-to-date, research-based information on systemic scleroderma diagnosis and treatment written in a language that patients can readily understand.  It is my strong belief that patients who are thoroughly educated about their disease can work more effectively with their team of physicians to make… Continue Reading

Share

Revised: “Scleroderma News” Follow-Up Interview About Recent ACR Research Poster on TPE to Treat Raynaud’s and Digital Ulcers

(Note: the link to the article in Scleroderma News in the earlier version of this post did not work correctly in some browsers.  More information on how to locate the article is included in this revised post.) Scleroderma News just released a follow-up interview with me on the research poster “Therapeutic Plasma Exchange for the Treatment of… Continue Reading

Share

Scleroderma News: Therapeutic Plasma Exchange May Be an Effective Treatment for Raynaud’s and Digital Ulcers in Scleroderma

From Scleroderma News (SclerodermaNews.com), October 21, 2016: “An overview of published studies exploring the use of therapeutic plasma exchange (TPE) in scleroderma patients indicated that the treatment improved Raynaud’s phenomenon and digital ulcers. Findings also showed that TPE made blood less viscous, improving blood flow and preventing blood vessels from becoming blocked.”  The abstract, published in Arthritis and Rheumatology, can… Continue Reading

Share

Scleroderma News: New Guidelines Aim to Advance Plasma Exchange as Scleroderma Therapy

From Scleroderma News (SclerodermaNews.com), August 17, 2016: The Scleroderma Education Project (SclerodermaInfo.org) recently released guidelines for patients and doctors wishing to know more about therapeutic plasma exchange (TPE) as a treatment option for limited scleroderma. The guidelines are designed to facilitate data collection to support the launch of a randomized clinical trial, and follow the… Continue Reading

Share

Scleroderma News: Alternative Scleroderma Theory Advanced by 22 Years of Therapeutic Plasma Exchange

From Scleroderma News (SclerodermaNews.com), July 21, 2016: A case study, describing the successful treatment of a scleroderma patient with repeated therapeutic plasma exchange (TPE) for more than 22 years, presents an alternative theory about the beneficial effects of the treatment and the disease itself. The study “Successful long-term (22 Year) treatment of limited scleroderma using therapeutic plasma exchange:… Continue Reading

Share

Scleroderma News Story: “Therapeutic Plasma Exchange and Scleroderma: An Exclusive Interview with Edward Harris”

The leading news source for information on scleroderma research – Scleroderma News (SclerodermaNews.com) – has just published an interview with Ed Harris, founder of the Scleroderma Education Project, about a research poster that he recently presented at the American Society for Apheresis (ASFA) annual meeting in early May, 2016.  The poster was a review of all of the published research… Continue Reading

Share

Scleroderma Education Project Just Featured in “Scleroderma News”!

The leading news source for information on scleroderma research – Scleroderma News (SclerodermaNews.com) – has just published an article about the Scleroderma Education Project, including coverage of our recent educational article titled “Yes, You DO Have Internal Organ Damage, But…”.  Scleroderma News has also recognized the Scleroderma Education Project as a “trusted source of information about scleroderma”.  Here is… Continue Reading

Share