Marrowforums - HRT with PNH

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- - HRT with PNH (http://forums.marrowforums.org/showthread.php?t=6614)

Hi,

I'm new to this forum I've had PNH for 18 years now. I'm being treated with Ultromaris. I'm 41 years old and I'm starting to have peri menopause symptoms, so my endocrinologist gave me a low dose birth control. I'm scared to take it because obviously blood clots, however my doctor called Alexion and they said patients that were on HRT while taking Soliris did not have blood clots while on the study. So I was just wondering if any of you ladies have gone through this and had any experiences that you could share with me? Any help would be greatly appreciated.

God Bless!

Hi, unfortunately i can not answer your question. But i would like to ask you about your experience with Ultomaris. My sister may begin treatment in 2022.

How was your experience with it? how long have you been on it? is the treatment indefinite unless there is a significant change in PNH clone/symptoms? Have you noticed any side effects? Were you able to get it administered at home or did you go to a medical facility?

thank you