My name is Anne. My husband, James, was always a very healthy, hard working person, but in November of 2008, when the weather in Virginia became cold, he began experiencing pain in his hands and feet. His fingers and toes had begun to turn a dark color. His hands and feet swelled to unimaginable proportions. The pain was excruciating. Thinking he had severe rheumatoid arthritis. the doctors’ gave him prednisone. He was taking 60 mg a day. His swelling did diminish somewhat, but the ever-darkening coloring in his toes and fingertips only worsened.
Frustrated, we tried a new rheumatologist who also sent us to a hematologist. They both agreed that he should start Cytoxin and chemotherapy drug given by IV. They hoped the immune system would stop attacking itself.
Over the next couple of months, his toes and fingertips became necrotic (dead cell tissue), and the pain was almost more than he could bear even with the strong narcotics. Now, July 2009, the vascular surgeon said the toes would have to be amputated as he was in great risk of infection.
Things started to improve, and James began taking a new drug for the arthritis. In November of 2009, he again started experiencing the same symptoms. This time however, his toes went necrotic much faster than the previous year. Shocked, we tried a new vascular surgeon. Again James went back in the hospital for second amputation. The surgeon removed his remaining three toes on his left foot. We left the hospital in mid January of 2010, thinking perhaps this time things would work out better.
A few weeks went by and the wound did not heal. Unable to keep his heating and air conditioning business going, we were desperate for answers. Afraid he would lose more of his extremities, I decided to e-mail the world famous Mayo Clinic in Rochester, Minn. The surgeon agreed that they may have seen this condition, and, if we could manage, we should go there.
In early February of 2010, we boarded a flight to Minnesota. James could barely stand and was in unbearable pain even with the narcotics. Much of this he doesn’t remember.
We had an appointment with vascular surgeon and the vascular “wound” clinic. One look at his “black” toeless foot and they told us he needed to be admitted as he was in risk of going septic and possibly even dying. After 10 days and endless tests, including a angiogram and a bone marrow biopsy, we returned home. Finally we had a diagnosis. cryoglublinemia type 1 and multiple myeloma, neither of which we had ever heard of.
A week later, we returned to our local vascular surgeon. Clearly, the wound had not healed from the first two amputations. They admitted him that afternoon. The surgeon again tried to take off the necrotic skin, which was the remaining top part of his left foot. Two weeks passed and still no healing. It was now early March. The determination was made to go higher up the leg in hopes that the larger blood vessels would have better circulation and the would would heal. Now his fourth amputation, the surgeon too off his left leg below the knee.
Having read information on cryoglublinemia, I requested that the surgeon warm up the operating room and the tools he would use. We are not sure if that was a key factor, but this amputation finally healed.
In all we spent 14 months searching for answers and visited numerous doctors. In September of 2010, James underwent a stem cell transplant and high-dose chemotherapy. The team of doctors at the Medical College of Virginia thought that this procedure would also put the cryoglublinemia in remission. We are happy to report the stem cell was a success and the cancer is now in remission. As for the cryoglublinemia, we are cautiously optimistic.
We now live in the greater Atlanta, Geo. area with our high-school-age son, Derrick, and three dogs.
For more information on cryoglobulinemia go to Alliance for Cryoglobulinemia.
Published: January 2013
To read more stories, please visit the Vasculitis Stories landing page.