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Tests indicate Alzheimer's: Any thoughts on Leqembi and Kisunla?

Posted by paul55 @paul55, Feb 16 9:53am

My wife tested positive for AD in a blood test about 6 weeks ago and was put on Donepezil. Now she had a PET scan which confirmed that result, she scored 3, which is positive for AD. Perhaps mild at this time. She is 70. She is doing a neuropsychological written test this week, and then we meet with the neurologist a week later to discuss everything and plan for treatment. They are suggesting going on these other two drugs, through infusion therapy apparently. I would appreciate any advice about these two meds and our situation in general. Pretty upsetting for her and me.

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theglobalnomad1 | @theglobalnomad1 | Mar 7 9:24am

I'm not a doctor but after my husband was diagnosed with Alzheimer’s this summer, I've studied a LOT! He has his 6th Kisunla infusion next week and is doing well. What I have found is that everything is so new with both Lequimbi and Kisunla that we're on the cutting edge of available info. And it changed daily! My husband had a centiloid score of 47, which is on the lower end but definitely Alzheimer's. He has one APOE4 gene which does NOT disqualify him for the infusions; the risk varies I believe if you have 2. He chose the Kisunla because of the monthly rather than twice/month infusions of Lequimbi. You have an MRI after each infusion for the first 4 to check for ARIA, which are microscopic brain bleeds, which in themselves are not dangerous, but would preclude further infusions I think. He has had a mild reaction in the first 10 minutes with each infusion (flushed face and "itchy tingling scalp") but they stop the infusion, he "cools off", and they start it again, sometimes with Pepcid in the IV- and he's fine for the rest of the half hour infusion and has no aftereffects, not even fatigue. No more MRIs are needed until after the 6th and 8th infusions, and then depending on those results (the last one, I think, checks for amyloid decrease instead of ARIA) we might not even have to do the full 18-months of infusions. It sounds like the results have been getting better and better as more people complete the 18-month process. Keep in mind these drugs are both really new, as are the diagnostic abilities to determine centiloid levels and positively identify AD. Anecdotally, we have a friend who has completed 18 months of Kisunla and feels it has made a huge difference. It is very hard to recognize that she even has any cognitive decline!

My prayers are that if this can slow or even stop the mental deterioration, the scientific community will develop a cure. Yes, they're are risks, but since there is no cure for AD, we are willing to take the calculated risks since the only alternative is the certainly of Alzheimer's decline and death.

Trying to stay positive and excited about possibilities and knowing that God is with us in the storm

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llthomson | @llthomson | Mar 7 10:05pm
In reply to @kjc48 "@llthomson Thanks for communicating back. Here's my take on the "delay things 6 months for every..." + (show)
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@llthomson Thanks for communicating back. Here's my take on the "delay things 6 months for every 18 months." And thank you for explaining. I never saw that article. Any ADDITIONAL extra valuable time with our spouses is worth it, but I think as important, my husband, with JOYFUL HOPE was all in when he chose to do the lequembe infusions. For us, we saw no other way, than to do it, and have faith that some progress would be made. None of know the outcome of our life. And anything we can do to help slow this disease down in our minds was worth doing. He was hopeful, and that hope every day, comes out in the joyful way he is still living his life. Even though he forgets, and we have minor meltdowns through the day, I can tell making the lequemebe decision was good for him, and gave him the inner resolve to "try to beat the outcome" if that's possible. . Maybe that's the way he chose to handle things quietly initially, but I notice this upbeat resolve to just do what he needs to do, which I know makes him feel better every day. When he talks to his son about how he's feeling, he's calm and joyful. A positive mind can conquer many things. Maybe not get rid of something genetic but can give us the courage to move through the day, the clarity in the decisions and lifestyle changes we now have to make, and trusting in God's light to show us the way. I keep saying "We are not alone" and for me in all of this, that is powerful and comforting.

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@kjc48 Thank you for sharing your experience. It helps me greatly.
I was fearful of such a treatment at his age. It is daunting to make these decisions. I will discuss this more with my husband and the new neurologist for our second opinion. Thank you, thank you.

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2me | @2me | Mar 8 7:38am
In reply to @kjc48 "@llthomson Thanks for communicating back. Here's my take on the "delay things 6 months for every..." + (show)
Profile picture for kjc48 @kjc48

@llthomson Thanks for communicating back. Here's my take on the "delay things 6 months for every 18 months." And thank you for explaining. I never saw that article. Any ADDITIONAL extra valuable time with our spouses is worth it, but I think as important, my husband, with JOYFUL HOPE was all in when he chose to do the lequembe infusions. For us, we saw no other way, than to do it, and have faith that some progress would be made. None of know the outcome of our life. And anything we can do to help slow this disease down in our minds was worth doing. He was hopeful, and that hope every day, comes out in the joyful way he is still living his life. Even though he forgets, and we have minor meltdowns through the day, I can tell making the lequemebe decision was good for him, and gave him the inner resolve to "try to beat the outcome" if that's possible. . Maybe that's the way he chose to handle things quietly initially, but I notice this upbeat resolve to just do what he needs to do, which I know makes him feel better every day. When he talks to his son about how he's feeling, he's calm and joyful. A positive mind can conquer many things. Maybe not get rid of something genetic but can give us the courage to move through the day, the clarity in the decisions and lifestyle changes we now have to make, and trusting in God's light to show us the way. I keep saying "We are not alone" and for me in all of this, that is powerful and comforting.

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@kjc48 Thank you for this. It is beautiful.

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2me | @2me | Mar 8 7:58am
In reply to @llthomson "@kjc48 Thank you for sharing your experience. It helps me greatly. I was fearful of such..." + (show)
Profile picture for llthomson @llthomson

@kjc48 Thank you for sharing your experience. It helps me greatly.
I was fearful of such a treatment at his age. It is daunting to make these decisions. I will discuss this more with my husband and the new neurologist for our second opinion. Thank you, thank you.

Jump to this post

@llthomson Agreed. It is very daunting to make these decisions. Kudos to you for getting a second opinion!

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kjc48 | @kjc48 | Mar 8 8:48am

Anytime we can reach out to help one another, yes, it is a beautiful thing. Thank you for your short uplifting note this morning. Such a perk on a sunny beautiful day in South Florida.

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maureenfromoregon | @maureenfromoregon | Mar 8 1:14pm
In reply to @llthomson "My husband is 84 and was diagnosed with MCI/Alzheimers late last year in October after his..." + (show)
Profile picture for llthomson @llthomson

My husband is 84 and was diagnosed with MCI/Alzheimers late last year in October after his knee replacement surgery in August. The options of Leqembi/Kisunla treatments were presented. I am just not convinced that 18 months of treatment with only 6 months benefit is worth it for him. On the other hand, I have no idea what his rate of decline will be. I signed him up with a personal trainer 3 times a week to exercise at a gym. I am hoping that would increase his mental stimulation helping him stay active and slow his decline.
Another 6 months...is also hard to refuse...but all these transfusions... We will be seeing another neurologist for a second opinion next month.
I would appreciate hearing from someone in similar situation and what your thoughts are.

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@llthomson

I'm a 75-year-old woman who just had my 4th infusion on Leqembi. That was the only option offered by my hospital system in Oregon. In fact, they only just now approved it, and I was told at the infusion center I was the first patient on it. I had researched both infusion options and decided both had pros and cons, so I was just happy to get started on one asap! I tolerate the infusions pretty well. A headache is the worst so far and after this week I didn't even have that.

Yes, MRIs are needed as you go through the 18-month process, but they become less frequent after you have several infusions with no issues.
I know that this does not cure or correct any decline thus far, but felt it was worth going through to slow down the progress from now going forward. I would have happily taken either of the infusion options!

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