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Opsumit and a less-discussed danger
I started Opsumit five months ago. It was added to IV Remodulin and Sildenafil to try to slow the progression of my PAH. The drug has very strict warnings about birth defects. They require monthly pregnancy tests for all women with the minute possibility of pregnancy and send a bevy of literature every month with the medication.
After a routine check up last week, when my Pulmonologist thought to run a routine CBC, I didn’t expect any surprises. A few hours later, the PH nurse calls me with …”We have a serious problem. You need to come to the Emergency Room right away for an assessment.”
I get there. Hurry up and wait through triage and the waiting room filled with lung infections waiting to happen. Doctor informs me that my red blood cell count is critically low, and that I will be admitted for a blood transfusion because with PAH, they need to watch me closely.
I received two units of red blood cells that night. In the morning, blood tests came back that some of the red blood cells disappeared. I wasn’t bleeding externally nor internally. Where did they go?
Cue intrigued hematology team. They read my medication list. What is this Opsumit? They disperse to find out while I receive another unit of blood, followed by three doses of iron. They would follow up next week.
When I get home from hospital, I pull out my Opsumit literature. The answer was right there. With all of the birth-defect warnings, I overlooked another. Opsumit is known to destroy red blood cells, the very cells needed to carry oxygen to our body. In the literature from the manufacturer, it explains that this rarely leads to the need transfusion, but severely anemic patients should not take this medicine.
And, with a bit of irony, the symptoms of low red blood cells (aka low hemoglobin) mirror the symptoms of PH and it’s treatments: extreme fatigue, low blood oxygen sats, pale skin, headaches, chest pain. I had spent the summer thinking I was dealing with more of the usual, and I think, without that blood test, I would have continued on to death.
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