Procrit and Sickle Cell

This week I wanted to talk about a medication that has REALLY made a difference in my life. Procrit (aka: Epoetin Alfa or Epogen) is a subcutaneous injection that I give myself three times a week.

I’ve been on Procrit for about five years now. For about a year or two prior to taking Procrit, my hemoglobin level hovered between 5.0 and 5.6. Needless to say, I was experiencing a high number of pain crises and a lot of fatigue. It really restricted my social activities.

Finally my hematologist suggested I try Procrit. Generally it’s given to patients who have cancer or issues with their kidneys Procrit stimulates your bone marrow to make more red blood cells. Obviously, more red blood cells means a higher hemoglobin level.

I don’t exactly recall how long it took, but it seems like within a few weeks my hemoglobin had gone from the five to eight. Obviously, I was physically feeling a whole lot better. I was having fewer crises and my stamina improved. Still today, thanks to Procrit, my hemoglobin ranges from 8.6 to 9.2.

Though Procrit has improved my health, there have been battles with the insurance companies. After a couple months, the insurance didn’t want to pay for it any more. Later I learned they had a good reason for that. A month supply cost around $1,000. Crazy, I know. My insurance said two things about Procrit: 1) That the medication had not raised my hemoglobin enough to keep paying for it; 2) Because no studies existed about how Procrit benefits Sickle Cell Disease, they would not pay for it.

I was beside myself with anger. On paper, the difference between 5.2 and 8.6 doesn’t seem like a lot, but it sure made a difference in how I felt.

To get around the insurance company’s red tape, my hematologist suggested that I go see my nephrologist (my kidney doctor). He hoped that since I do in fact have problems with my kidneys, that the insurance company might be more apt to pay for the prescription if it came from a kidney doctor.

So I played the “Out Whit the Insurance Company” game, and went and saw my kidney doctor. Sure enough, because of my kidney issues, and because my nephrologist wrote the prescription, I didn’t have any additional problems getting Procrit. In truth, my kidneys are doing pretty well—especially when I’m drinking the amount of water I should. The main reason I routinely see my nephrologist is so I can get Procrit paid for.

You might ask, “Since Procrit helps increase a patient’s red blood cell count, why aren’t there any studies done about how it helps Sickle Cell Anemia?” The answer is simple; “I don’t know.” That was five years ago. Hopefully there have been studies done since then.

As I’ve said many times before, “the only thing predictable about Sickle Cell is that it’s unpredictable.” Nearly three years ago, even though I was taking Procrit, my hemoglobin dropped to four. Eventually I had to be admitted and get a blood transfusion. Once I received a transfusion, my hemoglobin stabilized. So, even though Procrit has helped improve my red blood cell count, things are still going to happen.

Clearly, my purpose in writing about this is to help my readers. Ask your doctors about Procrit. Perhaps, in addition to doing all thing right things to take care of your self, Procrit can improve your health as it has mine.

Until next time...