@vivoconte It amazes me far reaching this disease can occur. I am glad you connected with Mayo Clinic. There is so much to say about how I felt being on HU for so many years. Some days I would look at the medication as a end to a life, but then as time went on and I was doing well with what seemed to be no symptoms, I accepted that it was actually a life saver for me. It is new to me now that I am NOT taking HU. I am sensing less fatigue all of a sudden, and better sleep, and I seem to be thinking better. The question now is - was I not myself while taking HU? Or is this a placebo effect of not taking it? Besremi is given by injection once every 2 weeks. It is odd to me - to not take something every day that depletes my bone marrow. How will this make me feel? Will it really work? The side effects always sound so much worse. They send you a box of loperamide (antidiarrheal) with your first dose. :Q I have not had that problem and its been only 3 days. I have not felt any side effects, but the first dose is very low only 50mcg. The treatment is actually much higher 200 or 300 mcg every two weeks. They start you out slower. I will see how I feel in a couple months. Most common side effects are Flu like symptoms, tiredness, weakness, fever, chills, muscle aches and joint pain, itching and sore throat. Less likely but more serious side effects exist. I would do a search on this so you are fully aware. For me, I just want to know if this will extend my life, longer than being on the HU. I've been lucky I guess, and feel like I have had my time on earth, so I don't have anything to lose at this point. Love and health to you my friend.
leene