Went for a follow-up with Hemey today...he was better today. We were at his other office location, and he didn't seem so rushed. We drew my blood to check my blood counts and they dropped again. Hemoglobin is in the 9's (normal for women is 12-16). We got a pre-authorization from my insurance company for Procrit, but I'm not ready to jump into it yet. I talked to Rheumy and he said that if I'm not sure, just wait a bit and see...if my lupus improves, my blood counts may improve too.
I was much better prepared with questions this time, and Hemey seemed more willing to address my concerns. The Procrit he would prescribe for me would be a very low dose, so he again said that there would be no side effects. I asked him about the black box warning and why the FDA would put that warning on a drug if there were no side effects. He explained that a lot of athletes use Procrit to bring their hemoglobin up to above-average levels, which makes their blood thick and can lead to heart attack, stroke, etc. Since we are not even bringing my hemoglobin up to regular levels (just up to a level to make me feel better), I wouldn't be at risk to those conditions.
I asked why we don't aim to bring me to a normal range and he said that insurance wouldn't cover it if my hemoglobin level is above 11.
I also asked again about how long I'd have to take the drugs. Hemey said that since it is caused by a lifelong condition, the therapy would be life long as well. The drug only temporarily boosts the hormone level to help the bone marrow produce red blood cells. I asked if there were any adverse effects to starting and then stopping the drug. He said no, just that I would start "dragging" again.
Hemey doesn't see my blood counts getting better since I am taking azathioprine, which he describes as a chemotherapy drug that decreases my bone marrow. Methotrexate (the other drug Rheumy gave me the option of) would have the same effect. However, taking azathioprine allows me to get off of prednisone, which has much more damaging long-term effects on the body.
Hubby was with me and asked if it would cause any damage to my organs -- kidneys, heart, etc., and Hemey said no.
I asked him if he would recommend that I take the Procrit. He said that it depends how I feel. If I feel okay, then no need to take it. If I am "dragging," he would recommend it. I explained to him that I feel tired, but I can get through the day okay. I told him it is hard for me to know what "normal" is. He concurred that a lot of patients don't really realize how much they are dragging until they take the Procrit and realize that life doesn't have to be the way they were living it.
I told Hemey that I wanted to wait and see, and he was okay with that. He said that we'll check my levels again in 3 weeks and if it drops again, he would recommend the Procrit shots. They don't seem as scary now as they did a week ago. I am feeling weak and tired, but not enough that I can't deal with it. If my hemoglobin continues to drop, I will consider starting on Procrit.
Oh, and I also got my flu shot today!
- a little lupie -
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