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 clinicians should make individual decisions on the suitability of TPE as a treatment for their patients with SSc.  If clinicians do decide to try TPE on an individual basis, it is important that they also try to extract as much useful research data as possible from any such individual trials.  This document includes a suggested protocol for clinicians to consider as well as suggested pre-treatment, during- treatment, and post-treatment testing to allow objective assessment of systemic changes that my occur as a result of the treatment.  It is our hope that data from these individual trials can provide important information that will allow us to better design future clinical trials of TPE as a treatment option for systemic scleroderma.

This document is available in both US and A4 formats:

Note: A companion document for patients titled “Therapeutic Plasma Exchange: A Guide for Newbies” is in final internal review and will be published shortly.

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

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

“Role of Autoantibodies in Systemic Sclerosis: Relevance in Clinical Practice”

Thomas A. Medsger, Jr., MD University of Pittsburg School of Medicine I just found a recent presentation by Dr. Thomas Medsger on the clinical significance of autoantibodies in systemic scleroderma.  This is a slide show presented to rheumatologists in Arizona in 2014 and is the best summary of current research on this topic that I… Continue Reading

Prevalence and Incidence of Systemic Scleroderma in the US

It is very common to read in articles about systemic scleroderma that there are about 300,000 people in the US with this disease.  This number is completely wrong, according to numerous research studies.  The most complete data on the prevalence (number of diagnosed cases) and incidence (number of new cases per year) of systemic scleroderma comes from a… Continue Reading

Suggested Guidelines for Individual Trials of Therapeutic Plasma Exchange to Treat Systemic Scleroderma

Recently, two patients who are currently discussing therapeutic plasma exchange (TPE) with their physicians as a possible treatment option asked me for some information to give to their physicians that described the protocol that was used in the recently published case report (Harris et al. 2016) titled “Successful Long-Term (22 Year) Treatment of Limited Scleroderma… Continue Reading

“Diffuse”? “Limited”? “Overlap”? “Sine”?: Know Your Terms and Your Antibody Type

(This post is focused on systemic forms of scleroderma only. For a discussion on non-systemic forms, for example, linear scleroderma or morphea, or scleroderma-like disorders, see the Differential Diagnosis section of the Scleroderma FAQ.) 25 Years Ago The names used for referring to the scleroderma family of disease are very confusing for a number of… Continue Reading

Review: Therapeutic Plasma Exchange for the Treatment of Systemic Scleroderma

Last week I attended the 2016 annual meeting of the American Society for Apheresis (ASFA) in Palm Springs, CA and presented a research poster titled “Therapeutic Plasma Exchange for the Treatment of Systemic Scleroderma: A Comprehensive Review and Analysis”. The poster was well received, I was able to meet with vendors and others that are… Continue Reading

Understanding the New 2013 Formal Diagnostic Criteria for Systemic Scleroderma

(Note: This is extracted from the Differential Diagnosis section of the Scleroderma FAQ.) In late 2013, the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) approved a new set of diagnostic criteria for systemic Scleroderma, replacing the older 1980 diagnostic criteria.  These new standards will improve clinical diagnosis of systemic Scleroderma, but… Continue Reading