For the past five years my wife, Jane, and I have gone south from Des Moines, Iowa to Mesa, Arizona for the winter. In 2017, after being in Mesa a month or two, I was feeling tired much of the time and my endurance was declining week by week.
When we returned home in April of that year, I was convinced something was wrong with my heart and met with my cardiologist. At the close of our appointment, she stated all tests were normal and the next step would be an echocardiogram. This, and the EKG that followed were both normal. In the meantime, she had me undergo a complete blood workup.
The following morning, she called and told me my symptoms were not heart-related but were caused by a very low hemoglobin count of 7.2, when the normal range for an adult male is in the 13 – 15 range. All my symptoms were caused by the inability of my blood to carry enough oxygen to supply the needs of my body. Because of my low blood count, she instructed me to go to the emergency room at the hospital. Upon arriving, my wife filled out the required forms and I was wheeled into an examination room where blood was drawn. When the blood tests came back, my hemoglobin level was down to 6.5. I was admitted to a room in the hospital where transfusions were given as needed.
I was there for two days. At this point, the hospital staff could not give me a reason for the low hemoglobin, but knew it was causing all my symptoms i.e., shortness of breath, fatigue, dizziness, rapid and sometimes irregular heartbeat, mental fogginess, and mild depression. I underwent a bone marrow biopsy and several other tests which would lead to a more complete picture.
Following the tests, my hematologist/oncologist said my hemoglobin was now at 7.5 and we spent some time going over my diagnosis which was finally confirmed by my bone marrow biopsy. The results indicated I had acquired pure red cell aplasia (PRCA). I tested free from the parvovirus which could have initiated PRCA. The X-ray and CAT scan found no sign of a thymoma, also a possible link to PRCA. Nothing in my blood tests or bone marrow biopsy showed any sign of cancer that might be linked to the PRCA. I had another transfusion and as I left the hospital, I was started on a prescription for 60 mg. of prednisone to be taken daily. Thus, began my first round of treatment for PRCA.
I was unprepared for the side effects of the prednisone. I noticed I was becoming much weaker and was short winded to the point that I could only take 15 to 20 steps at a time before I had to stop and catch my breath. I became very tired and slept many mornings after taking my first prednisone pills for the day. I also noticed I had become very sensitive to colder temperatures, found that my appetite increased, and I noticed it was hard to tell when I felt full. Other side effects I noticed were leg cramps and sometimes, restless leg syndrome.
Finally, after several months of full dose prednisone, my hemoglobin level began to move up and maintained itself in the mid-12 levels for several weeks. When my levels held, the doctor began to taper off the prednisone, 20 mg. every 2 – 4 weeks. When I reached 20 mg. per day, he tapered me down in 5 mg. increments over several weeks until I was at 10 mg. per day. During this time that I noticed reduced the side effects of the prednisone. However, when I reached the 7.5 mg. daily dosage, my hemoglobin dropped down to the mid-8 range and we knew the prednisone, alone, would not work for me as a permanent treatment. This was disappointing, but there were many other treatments available to try.
The next step was to try prednisone and cyclosporine together. My doctor immediately moved me back up to 40 mg. of prednisone daily. After I adjusted to being back on higher levels of prednisone, (unfortunately, the side effects all came back) he added 600 mg. of cyclosporine per day. Cyclosporine presented a couple of new side effects including anxiety and panic attacks. I called my doctor and he prescribed a mild dose of Valium to be used as needed to deal with these episodes and this worked very well. I also noticed I had “brain fog” and some trouble with my memory.
Once back in Mesa, I contacted the doctors recommended to me for initial appointments. The hematologist/oncologist at the Mayo Clinic in Scottsdale was very good in picking up on my ongoing treatment plan from my regular doctor back home. I selected a family practice physician and a cardiologist as well. Currently I am still tapering off the prednisone at 1 mg. intervals every four weeks. I am taking 300 mg. of cyclosporine and 10 mg. of prednisone each day. With the prednisone being lower, as before, most of my side effects have lessened considerably.
I am somewhat weaker than I was when I first was diagnosed with PRCA. However, I am much happier and have stopped taking the Valium My memory is back to more normal levels. PRCA is a disease that one must learn how to manage. I feel I am managing better now as I have gone through this process for almost two years. There is still a lot to learn, and sometimes learning can only be done through experience.