ApoE4 homozygote
Hello everyone, I'm 72 years old, was diagnosed with ALZ in Oct 2025 and started Leqembi infusions in Dec. I am still asymptomatic, but as an APoE4 homozygote I find myself waiting for the other shoe to drop. I have not met anyone else with two copies of the APoE4 allele (I understand we make up only 2% of the general population), so I feel isolated and would love to connect with others like me and find out how you are coping. Anyone out there?
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I was diagnosed in April 2024, with my first Leqembi infusion in June 2024. I recently had my 45th infusion (but who's counting!!!). I'm an ApoE4 heterozygote. For those who haven't memorized the lingo, those with one ApoE4 gene are referred to as heterozygotes, a homozygote has two ApoE4 genes. The risk of ARIA goes up the more ApoE4 genes you have: people with zero ApoE4 genes have the lowest risk, those with one gene somewhat higher risk, but those with two genes much higher risk.
As we are now in May, and you are doing well with no no symptoms of ARIA, it seems you are doing very well. Based on your schedule, I'm guessing you probably have completed your third MRI checking for ARIA, with only one more MRI to go.
For me, life goes on with the same routine. I take exercize classes at the YMCA, I'm involved in my local church, and I post message to AlzConnected!5 -
Greetings from San Diego. I just wanted to reach out to assure you that you are certainly not alone.
I am a male, 79 yrs old and was diagnosed with early onset ALZ in August ‘25.
I have received 6 infusions of Kinsula. I have had no negative side effects in taking this drug. It’s a little difficult to assess how the positive delay effects have affected my ability to stave off the final ‘destination.’
How has your drug infusions gone with you and have you had feedback from your Neurologist on the progress for which it was intended?
I would like to see more interaction between ‘likeminded’ folks on our journey together.
There is an abundance of comfort/support when sharing our individual journeys and the challenges we face. As a group we can lean on one another.John
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My wife )70 years old) also finished her 6th Kisunla infusions with no side effects at all (she has one copy of APOE4).
She is doing a blood test tomorrow to see if her Tau level has dropped or not. Her Dr wants to wait till she finishes her 12th infusion before doing Pet-MRI. Her centoloid was 120. She is also taking ARicept, Zoloft and many supplemets including lithuim and Mushroom mane based on her Dr suggestions. She has been pretty stable in regards to her memory in the past 2 years. Do not see a major decline, but no improvement either. We will decide what to do next after she finishes her 12th infusion.
Her memory is great in areas that she is most interested (when talking with her girlfriends) but she is really bad when it comes to remebring dates, appointments, … I am sure her friends have figured out by now that they set a date when they talk over the phone but she forgets all about it afterwards.
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Thank you for your informative post.
I’m hopeful your wife’s Tau screen blood test gives you good news. Was this the first Tau blood test taken?
I’m particularly interested in pursuing the supplement route your wife is taking. I’m going to be looking into this shortly.
if you have any specific guidance/information on the supplements I would be grateful in receiving.
I wish your wife a long and steady journey.2 -
Thanks for your response! It sounds like you're doing well, and that's great to hear. I've had 4 out of 5 MRIs and recently completed my 14th Leqembi treatment. Like you, I prioritize exercise - it's always been important to me. Now I need to check ALZConnected more consistently! Please care, and stay in touch.
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John, thanks for reaching out. You sound great! And I agree that group support is really helpful. Like you, I'm tolerating the treatments well, but the actual benefit is hard to detect. I really like my neurologist - he is a very knowledgeable and positive person. My DH and I belong to small support group of patients and their caregivers, facilitated by ALZ Association staff, that meets.monthly. We really enjoy the meetings and recommend this type of group for anyone so inclined. Best to you, John. Stay in touch.
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Hello, I was diagnosed in June 2025. I have APOE4 gene. I can't get approved for Leqembi by my neurologist. I live alone (with my dog and kitty). This is just so scary. I walk my dog at least two times a day. Try and stay busy, but it's sure on my mind all the time!
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Is it possible for you to see a new neurologist? My old neurologist said I could not take Leqembi because cause I already had a tendency to brain bleeds. I fired that Dr. and found another one at an Alzheimer's Institute kinda close to home. She decided to go ahead and get me on Leqembi but I was monitored very closely. I had to take MRIs every two infusions, four MRIs in total and I was given the all clear after each one to continue on the infusions. I an now about to go for my 17th infusion, i dont know yet if there are more MRIs in the future, i am assuming yes but no longer needed every month. My Dr. has provided me with symptoms I might feel-have if I start brain swelling and has given me her home number to call her if I start to have any. A "No" is not always a definite "No". Some Dr.s tell you the risks and rewards and allow you to make your own decisions. Wishing you the best. GE
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P.S. I live alone too, no dog, just a kitty. It use to be really scary for me too. Now not so much. I think learning to advocate for yourself is key. And be kind to yourself. It helps you feel like you are a little bit in control. GE
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You are not alone. I am 62y and diagnosed APOE4E4 (homozygote) and confirmed Alz in the last four months, MCI at this point. And we are actually only 1% of the population. Lucky us, right?!? Pretty much all infusions and rx at this point are off limits to us because of high risk ARIA. Have you found anything? I'm kicking butt with diet, supplements and exercise, sleep is improving with help of rx. It's very lonely out here. Let me know how I can support you!
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I take that back…some rx are available but not incredibly encouraging, they just delay.
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Most days I'm pretty positive and determined to kick it's a**, today I'm a little off. Sorry you caught me on an off day…
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I am new to this group and looking to connect and learn more. I believe in open discussions about Alzheimer’s, and learning about our options. I am 68 years young and in December 2024 was diagnosed with two Apoe4 biomarkers (homozygous) which puts me at the highest risk for developing Alzheimer’s. I began a head study with UCSF and received donanemab infusions in early 2025. After 3 infusions I developed ARIA, brain swelling and micro hemorrhages. UCSF is very careful about safety so I was not allowed another infusion until the swelling subsided, which it did and I was allowed another infusion. After that one the swelling and micro hemorrhages returned. I continued to receive monthly MRI’s but the hemorrhages continued. In July I had to discontinue the program. I’m wondering what’s next for me. I’d like to connect with other APOE4’s in the group.
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See my post July 31, Lumbar4. We should connect.
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Sorry to hear about your bad experiences with infusions. I am also an Apoe4 homozygote and invite you to message me privately if you like.
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thank you ….. I am thinking about getting second opinion!!!
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updating based on my last post dated 5/28.
My wife did Petscan last week after 8th Kisunla infusion and her Amoyloid plaque dropped from 120 to 69.
This confirms the infusion is working, however I am still puzzled of why the p-Tau blood test continued to go up to 0.92 in 2026 from .72 in Nov 25. My thinking is to complete her Kisunla to get to 20 centeloid and then wait for 3 months and switch to Esie drug (other infusion drug).
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Well, I just read the report on my testing and found I have the homozygous, 2 APOE e4 allele. The doctor had said on the phone earlier that one test looked good but the other was not. He didn't elaborate on details. So, I guess the chances of getting into any treatment are slim to none from what I am reading. Is that correct? Would sure explain the gal calling me today to let me know I didnt get in for the current round of treatment research. Might also explain why I cant seem to get in with a nurologist. Bummer. If you or anyone has any idea of a path forward please let me know.
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I'm sorry to hear this - so frustrating for you! Recommend you circle back to the doctor for clarification. Just being an APOE4 homozygote should not automatically disqualify you for treatment. You would, however, need further tests to determine your risk factors for amyloid-related imaging abnormalities (ARIA), because APOE4's are at increased risk from the treatment itself. At the very least, seek out a neurologist and don't give up yet! Best wishes to you.
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I was also diagnosed with Alzheimer’s in October 2025. I had only one APOE-E4 homozygote, thankfully. The neurologist who prescribed LEQEMBI for me stated that it is only used for patients in the MCI stage (mild cognitive impairment). She stated that patients in the moderate and severe stages of cognitive impairment were not recommended for that treatment.
My heart goes out to you on your journey.😢
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Hi my name is Akhila. I am 68 years old, new to the group and still learning how to respond or contact people in the group. I am interested in your experience as I am also APOE4 homozygous. I have seen a few others identify as the same. I have been in treatment at UCSF. I think it would be helpful to gather all of us together to share experiences with treatments, everyday life, thoughts, fears, accomplishments and more.
Are you interested? I don’t know how to create a discussion group. My email is [email protected]
Thank you. ~Akhila
Hi my name is Akhila. I am 68 years old, new to the group and still learning how to respond or contact people in the group. I am interested in your experience as I am also APOE4 homozygous. I have seen a few others identify as the same. I have been in treatment at UCSF. I think it would be helpful to gather all of us together to share experiences with treatments, everyday life, thoughts, fears, accomplishments and more.
Are you interested? I don’t know how to create a discussion group. My email is [email protected]
Thank you.
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