Plasma Exchange for Scleroderma: What One Patient's Experiment Taught the Field

Most medical protocols are written by physicians. This one was written by the patient.

Edward Harris was diagnosed with limited cutaneous systemic sclerosis, a form of scleroderma. He began therapeutic plasma exchange in 1993, not a drug but a procedure, on a schedule he designed himself. By 1996, after about three years of treatment, he had reached full clinical remission. His 2017 case report documented 22 years of treatment and sustained remission, leaving only very mild residual Raynaud's, and he has stayed on the maintenance protocol he built.

It is worth being precise about what "self-treated" means here, because it is easy to hear it wrong. Harris did not operate an apheresis machine on himself, and he is not a physician performing his own procedures. What he did was design a protocol, persuade physicians to administer it, document his own case with the rigor of a researcher, and then build a research program around it. He founded the Scleroderma Education Project, held an honorary associate appointment in rheumatology at the University of Wisconsin, Madison, and wrote standardized guidelines so that other physicians could run individual one-year TPE trials and pool their data toward a possible randomized study. That is a patient who engineered and championed his own care in partnership with clinicians. It is the opposite of going it alone.

The protocol: Pulsed Plasma Exchange

The protocol Harris designed is what he calls Pulsed Plasma Exchange, and its rhythm is simple. One plasma exchange treatment per week for four weeks, then eight weeks off, then repeat, indefinitely.

The replacement fluid is albumin, not fresh frozen plasma. That detail matters, because the rare allergic reactions described in the older scleroderma apheresis literature trace largely to plasma replacement, not to the exchange itself. And the protocol continues indefinitely because systemic sclerosis is a chronic disease. When the treatment stops, symptoms tend to return.

The blood rheology idea

The mechanistic argument is where this gets genuinely interesting.

The obvious assumption is that plasma exchange helps autoimmune disease by removing autoantibodies. Harris argues that in scleroderma, antibody removal is not the main event. His proposal is that much of the benefit comes from blood rheology, the physical flow properties of the blood itself.

Patients with systemic sclerosis have documented hyperviscosity and abnormal red blood cell aggregation. Their blood does not move through the smallest vessels the way healthy blood does. Removing a volume of plasma and replacing it with albumin reduces that aggregation and improves the microcirculation. That mechanism would help explain a clinical observation that antibody removal alone does not: why Raynaud's phenomenon and digital ulcers, both problems of small-vessel blood flow, tend to respond strongly, often after just three or four weekly treatments. A single-volume exchange removes only about 30 percent of circulating IgG, which is not a large amount of antibody clearance. The rheology effect is Harris's proposed key differentiator.

Where the evidence actually sits

This is the part that matters most, so I want to be honest about it.

Harris did not only treat himself. In 2018 he published a comprehensive review that analyzed 572 patients with systemic sclerosis reported in the literature, 455 of whom had received TPE. Across that body of work, most TPE-treated patients improved after just three to four weekly treatments, particularly in their Raynaud's symptoms and digital ulceration. His own case report of that long-term treatment had appeared in the hemorheology literature the year before.

The governing guidelines have taken note. The American Society for Apheresis, in its 2023 guidelines, lists systemic sclerosis as a Category III indication. Category III means the optimum role of apheresis is not established and the decision should be individualized, patient by patient. It is the same honest category the evidence places TPE for Alzheimer's disease in. Within that fact sheet, extracorporeal photopheresis carries a Grade 2A recommendation and TPE a Grade 2C. And the ASFA fact sheet cites Harris's 2018 review directly, quoting exactly that finding about improvement after three to four weekly treatments. A patient-advocate's analysis is referenced in the evidence-based guidelines that physicians actually use. That is unusual, and it is a measure of how seriously his work has been taken.

None of this means TPE is a cure for scleroderma, or that it halts the fibrosis that drives the disease. The evidence is strongest for symptom control, especially Raynaud's and digital ulcers, not for reversing the underlying process. Category III is the accurate frame, and I want to be as clear about that as Harris himself is.

My own connection, kept in proportion

My connection to this is through the research side. I am a co-author on a 2023 American Society for Apheresis abstract, "Response to Therapeutic Plasma Exchange in Two Patients with Systemic Sclerosis," which documents two patients treated with plasma exchange for the disease. One of them, Patient A, was scheduled for repeating cycles of four weekly exchanges followed by eight weeks off. That is the Harris pulsed protocol, essentially verbatim, showing up in a clinical setting.

I want to keep my role in proportion. I did not treat those two patients, and scleroderma is not a large part of my practice. My experience here is as an author on the abstract, and as a physician who has supervised over 500 therapeutic plasma exchange procedures across its more established uses. What the abstract reports, and I will keep to exactly what it reports, is encouraging within its limits. Patient A, after three cycles, said he felt better than he had in over two years, with improved energy, resolved dysphagia, and improved joint pain, and he gained about 4.5 kilograms. Patient B, over ten treatments in roughly six weeks, gained 5.56 kilograms, about 13.6 percent of her body weight, with improvements in appetite and energy. Two patients is not a trial. But it is the pulsed approach, applied and documented, with the outcomes stated plainly and not extrapolated.

Why this belongs in a supervised setting

Here is the point I care about most, and it is the same one Harris's own story makes.

Plasma exchange is a real medical procedure. It involves vascular access, the management of citrate and calcium, and careful fluid balance. The question is never whether it is supervised, but who supervises it: a physician trained in apheresis, working in a program equipped to manage those details. What makes Harris's story a model is not that he treated himself. It is that he did the opposite. He brought a rigorous idea to physicians, insisted on documentation, and built the partnership that let the idea be tested. The right frame for plasma exchange in scleroderma, as in every other application, is a patient and a physician working the problem together.

If you are living with systemic sclerosis and wondering where plasma exchange fits, the honest answer is that it is a Category III option best discussed with a clinician who understands both the disease and the procedure. You can read more about therapeutic plasma exchange and its use in autoimmune conditions.