“Breathe in, breathe out.” That is what I am doing to calm myself. Why am I in a dither? In recent weeks, two people on hepatitis C treatment that used ribavirin reported common side effects to their doctor or nurse, only to be told that their problems were not related to treatment. Excuse me? Does anyone read the package insert?
Some side effects can be serious. The following symptoms are uncommon, but if you experience any of them, or those listed in the IMPORTANT WARNING section, call your doctor immediately:
- upset stomach
- loss of appetite
- weight loss
- changes in ability to taste food
- dry mouth
- difficulty concentrating
- difficulty falling asleep or staying asleep
- memory loss
- dry, irritated, or itchy skin
- painful or irregular menstruation (period)
- muscle or bone pain
- hair loss
- swelling of the face, throat, tongue, lips, eyes, hands, feet, ankles, or lower legs
- difficulty swallowing or breathing
- pain in the stomach or lower back
- bloody diarrhea
- bright red blood in stools
- black, tarry stools
- stomach bloating
- dark-colored urine
- yellowing of the skin or eyes
- unusual bleeding or bruising
- vision changes
- fever, chills, and other signs of infection
- thinking about hurting or killing yourself
- mood changes
- excessive worry
- starting to use street drugs or alcohol again if you used these substances in the past
- intolerance to cold
But, there are more side effects. For instance, ribavirin causes a condition known as hemolytic anemia, which means that red blood cells burst early in their life span. Red blood cells carry oxygen to all the cells in the body, so if you don’t have enough, your heart will try to pump blood faster when you exert yourself. Some symptoms of anemia are fatigue, weakness, shortness of breath, dizziness, and irregular heartbeat, and a rapid heart rate even with mild exertion. You may feel like you are running on three cylinders. You may be pale, and your hands and feet may be cold. Your mouth may feel sore.
You can’t fix anemia yourself. You may have heard of iron-deficiency anemia, and wonder if you can take iron, but don’t unless your doctor prescribes it. Extra iron may harm your liver and won’t fix hemolytic anemia.
The body can function with a certain amount of anemia, but if your hemoglobin is too low, your doctor may lower your medication dose or order a blood transfusion. Take it easy and don’t overexert yourself.
Although ribavirin-induced hemolytic anemia is a common occurrence, a cardiac work up should be ordered. Chances are everything is fine, but a good doctor should refer you for a cardiac consultation. Sometimes we have coincidental problems that are unrelated to hepatitis C treatment.
Ask your doctor about supplementing with B12. Early research using B12 during hepatitis C treatment
(peginterferon and ribavirin), showed promising results. The studies were small. Although we don’t have research on B12 with ribavirin and new hepatitis C drugs, B12 at the right dose may be a harmless thing to try if your doctor advises.
It’s hard to stay calm with hemolytic anemia, but getting worked up just makes everything feel worse. After I was assured that I was not going to keel over, I created a mantra to keep me from being anxious, “Heart palpitations won’t kill me and I don’t need to be afraid of them.”
Some people have a genetic predisposition for ribavirin-induced hemolytic anemia. There isn’t a standard test for this genetic predisposition. Your doctor may be unaware of this predisposition. I only knew it existed because I had my DNA tested by 23andMe
If you have a hard time tolerating ribavirin, talk to your doctor about alternatives. Daklinza is now available, and some patients have gotten insurance approval for it. If you can wait, you might want to look into velpatasvir/sofosbuvir (Sovaldi)
. Formerly known as GS 5816, velpatasvir looks like the best hepatitis C treatment yet. Finger-crossed, it will be out late 2016.