During the summer of 2013, a total of 487 PRP patients were polled by email and given an opportunity to participate in a first-of-its-kind PRP Biopsy Poll. Remarkably, a total of 256 invitees (52.6%) shared their biopsy experiences and/or recollections.

• Dx with no biopsy ordered: 7.8%
• Dx with no contradictory biopsy: 45.3%
• Biopsy supported Dx: 23.4%
• Dx with no confirming biopsy: 23.4%

Everyone seems to agree that biopsies are a tool that reinforce the clinical observations of the dermatologist. If the dermatologist has seen PRP “in the flesh”, they consider it as a possible diagnosis sooner than a dermatologist who has absolutely no PRP experience.

I have spoken with dermatopathologists and they do look for “indicators”, but there doesn’t seem to be a “smoking gun” or a “Eureka” moment. I dug up my fifth Dermatopathology Report (Dr. Lydia Essary) and it said: “The findings were compared to the previous biopsy (CT12-204498) and the features in the current biopsy are a bit more characteristic and compatible with pityriasis rubra pilaris. Clinical correlation is recommended. Dr. Clay Cockerell has also reviewed this case and concurs with the diagnosis.”

The actual diagnosis was rendered by my second dermatologist who — earlier in his career — had been Chief Resident of Dermatology at University of Texas Southwestern in Dallas. Bottom line: it’s the clinical observation of a dermatologist who doesn’t get sucked down the rat hole of psoriasis, seborrheic dermatitis and other skin maladies that seem to mask PRP.
I wonder how many people with a psoriasis diagnosis who are NOT responding to the meds appropriate for psoriasis are, in fact, PRPers waiting to be found?

Like many PRP patients, my version of pityriasis rubra pilaris was misdiagnosed as seborrheic dermatitis and mistreated with escalating quantities of prednisone. After a week in the hospital and a fifth biopsy, the “official” PRP diagnosis was mercifully rendered.

“In retrospect,” Bill recalls, “my first dermatologist did not have PRP on her radar screen. The symptoms I presented were consistent with seborrheic dermatitis.”

A biopsy in September and one in October did not confirm PRP.  Moreover, a third biopsy performed at the Medical Center of Plano was also inconclusive. It was only when a new dermatologist ordered the fourth biopsy in late November and specifically included instructions for the lab to consider PRP, that the results were classified as “a bit more characteristic and compatible with pityriasis rubra pilaris.”

The dermatopathology report included an important caveat: “Clinical correlation is recommended.” And that is the first answer to the question. We are told repeatedly that there is no “smoking gun” to be found in a skin biopsy. There is no “Gotcha” moment.

This reality begs another question: Are the characteristics of PRP really so elusive that they cannot be seen? Perhaps we need to interview 50 to 100 dermatopathologists as advocates of better PRP biopsies.

Unanswered questions

• How should a biopsy be performed to increase the likelihood of a timely PRP diagnosis.
• For what specific signs and.or indicators should a dermatopathologist be looking for?

Source: June 15, 2014 issue of On the Road….

Jan T — Ringwood, New Jersey

Role of blood tests: My skin biopsy came back suggestive of PRP or an unusual drug reaction, and ruled out allergic reaction and fungus. My diagnosis was delayed because of blood work that confounded the finding of the biopsy and clinical presentation.

My dermatologist sent me to a consulting dermatologist (rash expert) and to a rheumatologist. I made those appointments the day my stitches were removed and I got the results of the biopsies. I had to wait two weeks to get into the out-of-town expert and 6 weeks to see the rheumatologist they recommended, by which time I was at the peak of symptoms and desperate.

My blood work suggested autoimmune disease/connective tissue disorder/muscle disorder–all of which were later discounted by more exacting blood work and patient history. The expert dermatologist also ruled out CTCL/Sezary’s . The rheumatologist did an extensive autoimmune panel.