When were you diagnosed? How old were you? I remember worrying about the safety of the HU, but when I quit HU and experienced a TIA, I came to peace with it and decided the HU was safer for me than going without. After that, I made a conscious choice to quit the worrying and constant research and just live life. In fact, I don't even think about it anymore after 30 years. Depending on how long you've been on the HU, I would wonder how much anxiety creates your symptoms, as anxiety definitely takes a physical toll. It's hard to say if it's the disease or the meds causing the symptoms. But I'd like to know more about your journey!

I also went through a period worrying about the safety of HU. However, once I tried going off and had a series of TIAs while off HU, it didn't take me long to realize I'd be better off taking the HU and not risk a debilitating stroke. That's been 30 years taking HU, and I rarely even think of it--my life is pretty normal for a 69-yr-old.