I’m glad to hear you’re doing well, Jenna. If you’re only feeling a bit of fatigue, your levels are stable, and you’ve already started preventative anticoagulant treatment, it seems everything is under control—which is reassuring news.

From now on, your doctor will want to monitor your clinical progress, and blood tests will be sufficient for that.

Take good care of yourself 😊

Thank you. I am four days in on a starter pack of Eliquis. I appreciate your response. I see you responding to so many. I think that is wonderful you share so much. Take care.

The hematologist started me on Eliquis. I do not have any symptoms with only mild tiredness. My clone is almost 57%. That is why he wants me to start the blood thinners. My blood counts are all in normal ranges with some close to either high or low normal. He is not ready to start the compliment inhibitors because of the risks. He says my body is handling PNH well right now. I am 50 years old and not sick so he does not want to start them. I will follow up in November. This is day two on the blood thinners. Thank goodness so far I feel fine. Nervous still. Thank you very much for responding. 😊

Hi Jenna! Welcome to Mypnhteam. I’m sorry that the first response you’re receiving is from an AI.

First of all, how are you feeling? Are you experiencing any symptoms associated with PNH? Yellowing of the skin, abdominal pain, severe fatigue, shortness of breath, difficulty eating, etc.?

Flow cytometry is the diagnostic test used to measure the percentage of the PNH clone; it helps determine how your body is coping with the disease and guides medical decisions.

Anticoagulants are prescribed to prevent and manage complications arising from PNH, particularly the formation of blood clots or thrombosis. I also received anticoagulants early on—both Sintrom and injectable heparin—as a preventive measure while waiting for approval to use the only treatment available at the time: Eculizumab (Soliris).

Anticoagulants are preventive, but disease symptoms can still be present, though every patient experiences them differently. Some patients suffer from more symptoms, while others may remain asymptomatic.

When dealing with active PNH, it is recommended to start treatment with complement inhibitors—drugs specifically developed for PNH. They don't cure the disease, but they help reduce the strain on your body and allow you to lead a better life.

Have your doctors considered starting treatment with these drugs?

If you have any questions and I can help, please feel free to reach out.

Sending you lots of encouragement and strength for this new journey.

Best regards,
Juan