I am new here and hope to benefit from people's experience with Actemra and specifically how it affects blood values.
My son was diagnosed with Adult-Onset Still's Disease (adult form of JRA) 25 years ago. He had JRA when he was 8 years old and within a year with treatment it went into complete remission until he was 25 when the Still's Disease was triggered. Since then he has had 23 surgeries including nine joint replacements, spinal and ankle fusions. Needless to say he has one of the most severe cases that his rheumatologist has ever seen. I don't think there is a drug that you could mentioned that he hasn't taken since his diagnosis.
He has been on Actemra for the last 2.5 years and it has helped him immensely; so much so that he is now down to 5 mg prednisone from a dose of 40 mg or more prior to that. However, recently his wbc count has declined over the last 3 months from 3.8 to 3.5 to 3.1 currently. His rheumy is nervous now and wants to discontinue the drug but nothing else has ever worked this well for him.
We would like to convince the nervous doctor that first of all a wbc count of 3.1, while low, is not at a "danger" level. Secondly we feel that lowering the dosage of Actemra might mitigate or reverse this decline in the wbc count.
I would appreciate knowing if any of you have experienced this problem with Actemra and what you have done about it.
His levels are perfect. Is your consultant very junior? down ward trend will be monitored tho> what are his neutrophils?
Actually no. He is a board certified older rheumatologist who is very experienced. My son lives in the States and doctors there are so cautious these days for fear of being sued. Frequently, they order unnecessary tests just to cover their backsides. I'm not sure what his neutrophils are; I'll ask him.
no reason to stop toc unless he is not responding/side effects. His neuts can drop to 1 on this as this is accounted for with this drug. Lipids can be affected. But can be treated whilst on the meds.
I'm not sure what you mean by " . . . this is accounted for with this drug." Isn't a neutrophil count of 1.0 serious?