My professional career for thirty years was with Colonial Williamsburg. I led children, adults, and even a king and queen on tours to explore our colonial history. I retired and shortly after turning 66, I was diagnosed with rheumatoid arthritis and treated with methotrexate. This may have led to my developing severe aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most… , although it cannot be proven that methotrexate was the cause.
I was determined to take control and sought additional advice from Johns Hopkins Hospital. My local doctor was very supportive. Within four months, and after having transfusions every four weeks, I was advised to take the horse ATG treatment. I did this at my local hospital, and the nurses were wonderful. But after three months, it became obvious I wasn't responding. I visited Hopkins again and the doctor said there was nothing they could do for me. Because of my antibodies, I was not a good candidate for a bone marrow transplant bone marrow transplant: A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers some patients the possibility of a cure. But for many patients, a BMT is not an option due… . But this same doctor showed me an encouraging chart - part of an article by the leading aplastic anemia doctors at the National Institutes of Health (NIH), and everything changed after that. I contacted NIH and was able to join a trial with the drug eltrombopag eltrombopag: What are the possible side effects of eltrombopag (Promacta)? Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficult breathing; swelling of your face, lips, tongue, or throat. Stop using eltrombopag and call your doctor at once if you have: … (Promacta®) for patients who were unresponsive to the horse ATG. After three months, I was once again a non-responder.
But 18 months later, I was able to join an extended trial for the same drug. This time, trial participants started eltrombopag at a higher level and were given six months to respond. Within eight weeks, my hemoglobin hemoglobin: A protein in the red blood cells. Hemoglobin picks up oxygen in the lungs and brings it to cells in all parts of the body. was not dropping as rapidly as usual. It has now been 10 months since I started the second trial, and my counts are climbing very slowly. I haven't needed a transfusion for almost six months since my last transfusion. I feel honored that I was able to participate in the NIH trials and hope they will lead to help for many other patients.
What made the difference in my case? At age 71, I probably just needed more time to respond to treatment, but I also believe one reason I've stayed positive and receptive is because I walk a mile or two every day and swim 40 minutes. I firmly believe that it's important to move ,and that getting oxygen pumping through our bodies not only helps us physically but mentally as well.