How to manage better and prevent worsening of hemophilia?

Question

Hello doctor,

I’ve been managing hemophilia for the past 10 years, but lately, with my busy work schedule, I’ve started noticing some changes that have me concerned. I’ve been having more frequent joint pain, especially in my knees and elbows, along with unusual fatigue. I’ve also had a few mild bleeding episodes, even though I’ve been consistent with my prophylactic Factor VIII infusions.

My recent labs showed a slightly prolonged aPTT and lower Factor VIII levels, but my hemoglobin and platelet count are still normal. I’m starting to worry that my condition might be progressing or that my current treatment isn’t working as well as it used to. Could we go over any adjustments to my treatment plan or steps I can take to stay on top of these symptoms? I really want to manage this before it gets worse. Kindly suggest.

Thank you.

Answer 1

Hello,

Welcome to icliniq.com

I understand your concern.

You are managing hemophilia (a rare genetic disorder where the blood does not clot properly due to a lack of sufficient clotting factors, proteins in the blood that control bleeding). That is amazing.

You’re absolutely right to be concerned. After long-term use of Factor VIII, some people develop something called inhibitors, antibodies that reduce the effectiveness of the treatment. This could explain your increased joint pain, bleeding, and lower Factor VIII levels. To check for this, you’ll need a specific blood test called the Bethesda assay, which looks for inhibitors against Factor VIII.

If inhibitors are present, treatment may need to be adjusted. There are different options depending on the severity, and your hematologist can help you choose the best one based on established protocols. Please follow up soon for testing so the right steps can be taken. I’ll be waiting to see your results.

I hope this helps.

Kindly follow up if you have more concerns.

Regards.