New treatment drugs for Alzheimer’s
Trying to decide between Kisunla or leqembi. With a centiloid score above 80. And are they worth it?
Hi
, I'm just checking in to see if you made a decision between the two drugs. They both have a different focus, Leqembi removes protofibrils and Kisunla binds to the plaques. If you've tried either one, what has been your experience? - Warmly, Donna (Team Member) well at this point we found out we have two copies of the APOE 4 gene which changed our views and changed some of our hopes, but we have decided not to continue with the Leqembi or Kisunla therapy. But as much as I want to, I just do not see where these will improve cognitive or really slow this disease down, specially in females. Now I guess we’re looking for alternative routes maybe Jean therapies or other trials big questions , I can understand and certainly support your decision. You have to do what feels right for you, your person, and your family. Has your doctor talked about studies that are recruiting? You can browse the list and details here: https://clinicaltrials.gov/search?cond=Alzheimer%20Disease&aggFilters=status:not%20rec
Please stay in touch and let us know how things are going. - Warmly, Donna (Team Member)
Thanks, Jill. yeah, we’ve been offered Leqembi or Kisunla. one seems to attack the protofibrils that form plaques and the other one seems to attack the plaques themselves in your brain. It’s just a little misunderstanding are hard to figure out which process may be better for a better outcome and why one does one thing and the other one does another thing. We have a high presence of plaques to start with so it seems like choice would be Kisunla.
I’ve spent a great deal of research trying to figure out which would be a better choice attacking the protofibril fibers. or going after the plaque themselves if the brain can handle the drug. I am sure our doctor has some insight for us. It’s just that we don’t have any way to see the doctor and tell our next visit and if I knew another neurologist to call or even get some advice, I would do that, hopefully some of them weigh in on my problem. Also with a disease that progresses and you’re going to try one of these drugs you need to get busy quick as possible.
I am glad to hear you have been researching and trying to figure out the best option. Is your next appointment Friday? Is that why you were trying to make a decision by then? If so, I would definitely recommend taking the time to ask your doctor all your questions and concerns. If you don't feel like they are giving you a thorough explanation, you can always ask for a referral. I know you want to get started as soon as possible but make sure you are comfortable with the decision. I am sending you over a list of resources that I hope can help you as well. Please keep us posted. Jill (Team Member) https://alzheimersdisease.net/answers/resources
Thanks Jill. Yes our decision is Friday and we have been seeing a highly rated neurologist. Just wanted to make the best choice with a better understanding.
, just another thought, a navigator at alz.org may be able to provide some resources to help with your decision. - Please do keep in touch! - Warmly, Donna (Team Member)
Now our decision has to come with us having two copies of the APOE4 gene ,therefore, I’m question the benefits if there is any and the risk sure became a lot greater I’m wondering if there’s people out there on the two copies that aren’t having trouble? Or any knowledgeable information that will help. So that decision isn’t final yet in my heart I feel it’s not a good fit.
