The name of the pain does not remain the same

Dana Farber examined me this morning and they state that the diagnosis from the rheumatologist was incorrect.

The Stem Cell Transplantation Program Chief stated that I am having an adverse Graft Versus Host Disease (GVHD) symptoms that, if not treated, can cause some significant and life threatening problems.

Cool.

They wish for me to undergo a process called Extracorporeal photopheresis (ECP) to address the issue and reverse existing damage.

ECP is similar in some ways to dialysis in someways because my blood is "cleaned" and returned.

Using two iv leads, blood is extracted, mixed with some chemicals, flashed with UV light, then fed back in.

Sounds like oodles of fun for all concerned.

A name for the pain

My rhuematologist finally thinks he knows what is causing all of the pain, eosphenolic fasciitis. A more common name for it, thank you internet, is Shulman's Syndrome. Among its more charming aspects, it causes skin contraction, swelling, and a thickening of the skin. The constriction is the source of the stiffness/pain, loss of motion, and an orange peel like dimpling of the skin. A common treatment is to use medications that suppress the immune system to reverse the swelling. Because of my stem cell transplant and already impaired immune system, that is kind of a problem. For the time being, my prednisone dosage was upped from 5mg to 40mg which seems to have helped a little. I'll be meeting with Dana Farber and Brigham Womens on Tuesday to find out the next steps for this as well as having a bone density test. The bone test was already scheduled so it will be a busy morning.