Good Riddance to Prednisone

As a nudge by nature and a reporter by training, I’m good at asking the same question in different ways until I get an answer. Sometimes, truth be told, I might ask different questions in an attempt to get the answer that I want. This is a little like refreshing your phone over and over if you want the weather report to change.

Prednisone and skin cancer: I'd like to be done

For the past 12 years, this exercise has been unfulfilling when it comes to getting my doctor at the Dana-Farber Cancer Institute to tell me when I can get off prednisone. I have always gotten some version of the same answer, including "not right now,” and "we don’t want to rock the boat.” There's also, “if the GVHD flares up, it will be a big setback.”

I was on prednisone because of leukemia

I was only on one milligram of prednisone, down from 40 when I first took it after my fourth stem cell transplant to tamp down graft vs. host disease (GVHD) of the skin and gut. As I explained over on blood-cancer.com, a stem cell transplant uses healthy stem cells to replace a leukemia patient’s damaged ones.

I'd love for these complications to go away

The new healthy stem cells have a job of guarding against leukemia cells, which is called the graft vs. leukemia effect, but sometimes they mistakenly attack the patient, also known as the host. This is called graft vs. host disease, or GVHD, and prednisone is a tool for suppressing this nasty side effect. I had GVHD of the skin and GVHD of the gut and would be happy not to have it come back.

Prednisone and SCC

I would also be happy to be free of recurrent squamous cell skin cancers, and that’s where stopping prednisone comes in. Even though I had tapered over the years, even the small dose was problematic. Long-term use of prednisone has side effects that include an increased risk of infection.

More skin cancer than I can count

It can’t be proved the same way a bruise is a direct result of bumping into something, but my dermatologists have said that being immune-compromised is one factor in all the skin cancers that I get. I had one basal cell in my ear and more squamous cells than I can remember. I am such a frequent visitor to the Mohs center at Faulkner Hospital in Boston that it is like my “Cheers.”

My dermatologist agrees with me

These unwelcome visitors have popped up on my ankle, neck, cheek, nose, hand, scalp, lip, and other places. Over the years, when another squamous cell carcinoma has popped up, I have said to my dermatologist some version of “wouldn’t it be great if I could get off prednisone?” The dermatologist has agreed, but it is not their call.

I'm finally done!

It is of course hard to quantify the role of prednisone, but I know that it exists. I don’t know of any way to say mathematically or scientifically how many fewer skin cancer spots I will get. I could do a self-study in hindsight though because I’m excited to say that after 12.5 years, I finally got off of prednisone! And after all that pestering, it wasn't even me who asked to discontinue it.

I was so quick to say yes

It happened in a recent visit with my new doctor. “Would you like to get off prednisone?” he asked. I was quick to answer: “Yes! But don’t tell Dr. Alyea,” I joked, referring to the doctor who didn’t want me to get off of prednisone, who left for a job at another cancer center. I asked if I should wean, but he said since it’s such a low dose, it doesn't much matter, but I could go to taking it every other day for a week or two and then stop.

Anticipating some problems

I asked if I would have any problems because I heard that people have mood changes (for the worse) when they stop. He said I might be a little tired, but again, stopping such a low dose shouldn’t hurt me. I'm glad to report that so far, so good!

Now I’ll have to wait and see about those squamous cell cancers. Fingers crossed!

Do you have experience with taking prednisone long-term? Have you noticed a link between prednisone use and skin cancer?