Author Archives: Ed

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.

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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

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Safety of Autologous Hematopoietic Stem Cell Transplants (HSCT) in Systemic Sclerosis

For those of you interested in autologous stem cell transplants, this paper was just published open access in “Clinical Rheumatology”: https://link.springer.com/article/10.1007/s10067-017-3954-5. Autologous HSCT may be an appropriate treatment option to consider in certain cases of rapidly progressing disease, but this is a reminder that this is still a high-risk procedure. Here is the abstract: “Autologous… Continue Reading

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Article on Heated Gloves for Hand Dysfunction in Scleroderma

This article was supplied to me courtesy of Dr. Allan Metzger*, Medical Director of RDL Reference Lab in Los Angeles.  It is an anecdotal guest column in the publication “The Rheumatologist” on the benefits of heated gloves on pain from Raynaud’s attacks, digital ulcers, and general hand discomfort from a patient with diffuse systemic scleroderma.… Continue Reading

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Updated Version of “Suggested Protocol for a One-Year Trial of Therapeutic Plasma Exchange for Treating Systemic Sclerosis” Now Available

The purpose of this document is to provide background information for clinicians and patients who have reviewed the research literature on the use of therapeutic plasma exchange (TPE) to treat systemic sclerosis (SSc) and made the determination that this may be an appropriate treatment option.   Currently, the American Society for Apheresis Guidelines suggest that… Continue Reading

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2017 EULAR Report Recommendations Summary Chart

I have had several requests for a simplified version of the new 2017 “Update of EULAR recommendations for the treatment of systemic sclerosis” paper that I mentioned in a post yesterday.  The paper includes a summary table that consolidates all of the new recommendations into a single table, sorted by symptoms.  You can view a slightly simplified… Continue Reading

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Update of EULAR Recommendations for the Treatment of Systemic Sclerosis

Recently, the European League against Rheumatism (EULAR) released updated research-based recommendations for treating all aspects of systemic scleroderma.  It is freely available online here: http://ard.bmj.com/content/early/2017/04/25/annrheumdis-2016-209909?papetoc.  While this is a very technical article, most of it is actually pretty easy to understand as long as you are not intimated by the heavy use of abbreviations, universal in published medical research papers.… Continue Reading

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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

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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

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