Talking to Your Doctor About Trying Pulsed Plasma Exchange? Invite a Hematologist into the Discussion

As more and more patients are now starting trials of pulsed therapeutic plasma exchange (PPE) as an experimental treatment for their diagnosed systemic scleroderma (SSc), I have noticed that in several recent cases, a hematologist has been added to the care team.  The presence of a hematologist allows the rheumatologist who is typically heading the care team to feel more comfortable trying PPE.  The reason is simple: therapeutic plasma exchange (TPE) is a routine treatment [...]

September 10th, 2023|Categories: News & Announcements|2 Comments

Pulsed Plasma Exchange (PPE) treatments must be continued indefinitely

Currently, there are about a dozen systemic sclerosis patients on the pulsed plasma exchange (PPE) protocol described in this document: http://sclerodermainfo.org/pdf/TPE-Guidelines-US.pdf.  Some have been on the protocol for years and others are just starting.  I presented a research poster on four long-term patients with limited systemic sclerosis at a medical conference this past May.  That is discussed in another post. The purpose of this post is to document that PPE, like all treatment approaches used [...]

The Effects of Pulsed Therapeutic Plasma Exchange on Gastrointestinal Symptoms in Limited Systemic Sclerosis: A Case Series

I am currently (5/6/2022) at the American Society for Apheresis (ASFA) annual meeting in Philadelphia presenting a poster titled "The Effects of Pulsed Therapeutic Plasma Exchange on Gastrointestinal Symptoms in Limited Systemic Sclerosis: A Case Series" [1].  (The abstract of the poster is at the end of this post.)  Six years ago, at this same conference, I presented an early version of the comprehensive review on the use of therapeutic plasma exchange as a treatment [...]

ANA and Antibody Testing in Systemic Sclerosis: A Guide for Patients

On Saturday, May 15th, I did a presentation and follow-up Q&A session to a joint meeting of several Scleroderma Foundation chapters on a very important, but complex topic – ANA and antibody testing in systemic sclerosis.  While much of this information is on the Scleroderma Education Project website, this presentation contains updated and additional information that we have not published before.  (The information on the website will be updated this summer.)  I was very fortunate [...]