Drug-Induced Hepatitis while on Actemra for GCA

No I haven't but I can tell you I had drug-induced hepatitis once from another drug and I was deathly ill. Debilitating nausea, aches and pains. It started slow but became bad fast.

If you think you have it, call your doctor immediately.

I wouldn't say that I had hepatitis while being on Actemra for 6 years but my liver enzymes increased a tad at various times. I haven't needed to discontinue Actemra. I think the threshold for "holding a dose of Actemra" is when liver enzymes are above 3 times the upper limit of normal.

Actemra should be discontinued entirely if liver enzymes are greater than 5 times the upper limit of normal. Doctors can use their discretion for deciding what to do for mild to moderate elevations of liver enzymes.

My rheumatologist consulted with a liver specialist who said my moderately elevated liver enzymes were probably related to fatty liver disease from my long term Prednisone use.

Prednisone is processed by the liver and can lead to a buildup of fat in the liver. This condition is called MASLD (Metabolic dysfunction-associated steatotic liver disease). I continue to see an endocrinologist for metabolic syndrome 5 years after Actemra allowed me to taper off prednisone. Long-term prednisone use can cause or worsen metabolic syndrome by increasing blood sugar, blood pressure, and weight gain, and disrupting lipid levels.

Diet and exercise are the main treatments for metabolic syndrome. Avoiding things like alcohol and medications that are hard on the liver is also important. I have done these things and the last time my liver enzymes were checked ,,, my lab values were normal.

I have kidney stones that are monitored yearly. I still have fatty liver disease that shows up when they do an annual abdominal CT-scan to look at my kidney stones.