To choose or not to choose
I would like to hear from someone who is on this one and of any side affects.
Comments
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Hi Andrew, I am assuming your Dr is talking about the 2 drugs approved by the FDA. I recently finished my 18 months of Leqembi infusions and now on weekly maintenance injections I do at home indefinitely. I had no issues except for an occasional mild headache. I was diagnosed in 2014 and still live a good life. I was 59 at the time and am now 71. I have always followed my medicine that I have been on since my diagnosis and was anxious to get on the approved injections. I had a Pet scan after the infusions for 1 year and showed a 30% reduction in amyloid plaques. The plaques will probably come back eventually, because this is not a cure. It slows down the progression of the disease. But as long as I can stay on the maintenance dose weekly, I will. You have to do your own research on these drugs. I don’t know a lot about Kinsula, you need to research both drugs and ask lots of questions. There is a lot of protocol testing to determine if you are at any risk to take either of these drugs. Feel free to reach out to me if you have other questions.
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I also finished my 18 months of Leqembi. I am going on the maintenance infusions once monthly currently. They did not rescan me because insurance was not going to cover it, so I am not sure how much how much my amloids went down.
I am so happy to hear that you are still going strong, I always wonder how much time I have left before I am no longer myself. I know everyone progresses at their own pace, but you give me hope that I have longer than I thought.
Thank you for your incite,
Lori
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I just got diagnosed and am waiting to get in touch with the center to start the infusions. My neurologist says it is very helpful and there are not a lot of side effects. I am a physician and when my patients express concerns about medication side effects, I encourage them to at least give it a try and if they hate it, it can be stopped. Even if you get side effects, you can stop the medicine and the side effects will go away. I would encourage you to give it a try and buy yourself some time. You are losing so much already. Fight to give yourself as much time as you can.
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