Author Archives: Ed

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.

Share

Do You Know Anyone with Psoriasis? I need your help!

As many of you know, last Spring I conducted a survey looking at blood type distributions in patients with systemic scleroderma.  We managed to get 924 responses and the results were clearly different from the overall population.  If this finding is unique to scleroderma, it could give us better insight into why some people are… Continue Reading

Share

Blood Type Survey Part 2: Lupus, Rheumatoid Arthritis, Psoriasis, and Ankylosing Spondylitis

Do you have relatives or friends with lupus, rheumatoid arthritis, psoriasis, or ankylosing spondylitis? Now is your chance to help advance some of our current research efforts. As many of you may remember, earlier this year the Scleroderma Education Project conducted an anonymous survey of blood types in patients with diagnosed systemic scleroderma. We received… Continue Reading

Share

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

Share

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

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

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

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