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Does anyone feel exploited by PNH drugs? Have you felt pressured to start treatments?
I was only diagnosed in April and I felt fantastic after starting blood thinners and then my two loading doses of Ravulizumab. My fatigue, dizziness, increased or evident hemolysis ramped up a couple of weeks before my third infusion and continued for two weeks post infusion. Symptoms returned about a week ago and my next infusion is in a couple of days. It seems we have to give the body time to adjust and to watch symptoms and monitor blood work and to allow for a few months of treatment to get a better idea of how well the current treatment will work. So I'd say it's a bit up and down.
Hey @A myPNHteam Member! I found some members who may be able to share their personal experience with it! Hope they can chime in @myPNHteam users... 's companion who has experience
Ravulizumab (Ultomiris) is a well-established treatment for PNH that's given as an infusion every two months, which is more convenient than some other treatments that require more frequent dosing. It works by blocking complement factor C5 to help protect red blood cells.
Studies have shown it to be just as safe and Show Full Answer
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