Newly diagnosed this week

Matoaka2

67 yrs old and just diagnosed with Alzheimers. For the past 6 yrs I've been diagnosed with mild cognitive decline but it just started getting worse. The memory clinic I go to had me go through a spinal tap, mri, amyloid PET/CAT, and genetic testing. All tests revealed frequent Amyloid which is now in the gray matter of my cortex. I also carry double APOE 4 genes. My mom and dad had Alzheimers. My neurologist wants me to start the Kisunla infusions. I'm scared 😱, depressed, and still numb from the diagnosis.

Dorse

https://alzconnected.org/discussion/75086/newly-diagnosed-this-week

I certainly understand how you feel about this diagnosis. I was diagnosed with alzheimers / mild July 14, 2025. I think only those of us who have heard that diagnosis can understand how it affects our lives, how life changing it is.

Dneige89

I was diagnosed MCI/ALZ in December 2025. It’s a frightening diagnosis knowing that there is no cure for Alzheimer’s and the devastating affects it can have on you and your loved ones. Take a deep breath. There are options for anti-amyloid treatment. There are lifestyle changes such as diet, exercise, socializing, and reducing stress that can help. You’re in the right forum for ongoing support! You are not alone.🤗

Alzsymptoms

https://alzconnected.org/discussion/75086/newly-diagnosed-this-week

I feel you 😔, please know you’re not alone. I’m 69 and got my PTau and PET scans two days ago. They indicate strong likelihood of Alzheimer’s, which I’ve suspected for about 10 years. I sobbed for about an hour when I saw the results, so sad, mad, scared, and worried. I too have been numb through the last two days but I also have a bit of hope for at least slowing the disease.

I’m here because I want to be part of a supportive community that can share their experiences with this disease. The only person I’ve told is my husband, and I have no idea how or when to tell others. Hopefully we can share our journeys, the good, bad and ugly.

btrackwell

It is very helpful hearing other peoples stories and knowing we are not alone. Thank you for sharing. I am 69. When my PCP suggested I see a neurologist about a year ago, I said "no thanks, I'm fine". Deep down I knew something was wrong but wrote it off to past trauma and I have been working hard on maintaining a healthy lifestyle. Then I mentioned it to my kids and they said they really wanted me to get it checked out even though it may be nothing. It took 6 months to get into see a neurologist. When the neurologist mentioned doing the tests for Alzheimer's, after ruling out other things, I was floored. He dropped the "A" bomb on me. I went through the devastation of this disease with several family members. It took me about a month and a half to process the possibility of having Alzheimer's and get back to the neurologist to get the process started with all the tests. I prayed the tests would be negative. They weren't. Now that I've had all the tests confirming the Dx, I have started the process to receive the treatments. I can't decide which to choose, Kinsula or Lequimbi, I am stuck. The Drs. want me to choose. That's the main reason I am here on this site to hear how others, especially women, are doing with the treatment. Like several others on this chat, I am scared as information out there is limited and there are so many unknowns. I still function pretty well and am very independent like some others on this site. I don't want to lose that. My fear is the treatment will make me worse since several medical treatments in the past have made me worse instead of better. It is nice to know others also have some of the same apprehensions. I'm not the only one. My kids are getting a little frustrated with me but agree it is my decision.

lfaust58

I recommend Lequebmi

GEH

I too recommend Leqembi. I am 68yo female, have received only six infusions so far and can already notice a difference. Additionally, I have had my first MRI since starting on Leqembi and Doc says the images are "stable" which I am taking asva good sign. Additionally, Leqembi not only targets plaque in the brain but also the "itsy bitsy teeny weeny" pieces of precursors to plaque called, I think, "protofibrils" which I think help to stop the plaque from building up again. People smarter than me on this forum, will chime in to help clarify this for you. There is a ton of information out there regarding both of Alzheimer's medications. I might ask your neurologist for sources of reference materials if you would like to research for yourself. I personally would not wait one more day to start the process of getting on Leqembi. Good luck to you and let us all know how you are getting on. This is a pretty safe place to share. GEH

LBC83

https://alzconnected.org/discussion/comment/263714#Comment_263714

I know the feeling. I also had family history with dementia. My dad perhaps progressed to the moderate dementia stage before dying of cancer. But my mom lingered on and on with dementia. Amongst my siblings, I was the one who lived in town with my mom, so I was the primary point of contact for most things with my Mom (with both of my sisters helping out as best they could).

Regarding your Kisunla / Leqembi decision, one strategy for making a decision could rest on what parameters are most important to you. A key difference between the two drugs is the frequency of infusions: every 2 weeks for Leqemb versus every 4 weeks for Kisunla. For those who have a long commute to an infusion clinic, this could be a very big deal, and might drive the decision between the two drugs.

If safety is your primary concern, then Leqembi may be the better choice with a slightly lower ARIA rate compared to Kisunla.

If your primary concern is getting rid of the amyloid plaque in your brain and stopping treatment as fast as possible, then Kisunla would be the better choice. In the clinical trial with Kisunla, 30% of the participants were amyloid clear after 6 months of treatment, 66% at 1 year, and 76% at 76 weeks. For the trial, participants received amyloid PET scans every 6 months. But nowadays, it is easy to get a simple blood test to check your amyloid plaque level every 6 months with Kisunla treatments to see if you are amyloid clear and can stop treatment.

In contrast, as mentioned by other posters, Leqembi removes both amyloid plaque and amyloid protofibrils. So after amyloid plaque has been completely removed, there is an option to continue with Leqembi treatments. This is referred to as "maintenance dosing". I am an example. I completed 18 months of Leqembi infusions every 2 weeks. I then had a blood test, which confirmed I'm amyloid free. I'm now on Leqembi maintenance dosing with infusions every 4 weeks. Although I'm free of amyloid plaque, amyloid protofibrils are still being created in my brain, and my infusions every 4 weeks clears out this gunk. I'm hoping to switch to the new IQLIK, which is a subcutaneous formulation of Leqembi. This is a fancy term meaning you get a shot you adminster at home with a self-injectable pen (sort of like an EPI-pen, you hold the device against a part of your body and then just push down, the device then injects the drug into your body).

Nowadays, there are internet reports of some folks want the "Best of Both Worlds". These people plan to start with Kisunla (so they only have infusions every 4 weeks). Then after they are amyloid-clear, they plan to switch to Leqembi for maintenance dosing. This is a very new thing, and clearly your Neurologist would have to be onboard with such a strategy. But it may be another option.

This may seem overwhelming. But consider when you go out to a restaurant for dinner. You have a forced choice, as there are lots of options on the menu, many of which you like. But you must make a decision and live with it. In a similar way, the Leqembi/Kisunla decision may seem overwhelming. But perhaps the most important thing is a decision to start on either drug (as opposed to deciding to not start treatment).

If from your perspective the two drugs seem very similar and you don't see any important differences, then you could just flip a coin (heads Leqembi, tails Kisunla)! Or you might just want to go with Kisunla simply because you only have to modify your schedule to accommodate infusions every 4 weeks instead of every 2 weeks with Leqembi.

One last thought, you might want to talk this over with a trusted friend. Not so much to get their advice, but I've found that sometimes just verbalizing your thoughts can help with a decision-making process.

BadMoonRising

You have two copies of the APOE4 gene. Did the neurologist discuss the increased risk of harm to those carrying two copies of the APOE4? If not, I'd be looking for another neurologist.

In the U.S. there is a black box warning for 2x APOE4 carriers and in Europe, the drugs are not even available for 2x APOE4 carriers.

If the neurologist did discuss the risk, I'd still give myself some time to recover from the shock of the diagnosis before committing myself to the study. Most of us suspect we have AD but hearing the confirmation is mind-numbing. Give yourself time to take a breather.

66 with MCI

I was diagnosed this week on Wednesday, the 14th., with MCI. I am still trying to sort through everything as my wife and I have a follow up appointment with the neurologist's office early this week. It looks like infusions are going to be recommended, at least that is what she mentioned before the PET scan when we were talking. It has taken almost two years to get to a confirmed diagnosis.

We have only told the pastors at our church and a few of our closest friends. I am waiting to tell my brother until after the follow up. Our daughter is in grad school 10 hours away and I think we need to tell her face-to-face so we planned a trip on Valentines weekend. Unfortunately or fortunelately her undergrad degree was in neuroscience so she knows a good deal about the brain.

Sorry for this long post. I am lost right now and needed to rant a little.

kshif06

https://alzconnected.org/discussion/comment/263714#Comment_263714

My neurologist told that if you have an APOE 4 gene you can’t take either meds because of increased risk of brain bleeds.

LBC83

https://alzconnected.org/discussion/comment/263947#Comment_263947

While there is a lot of misinformation on the internet, apparently there are also some misinformed neurologists!

It is true that in the clinical trials for Kisunla & Leqembi, the results showed that those with one APOE4 gene had higher risk of ARIA (the technical term for brain swelling or bleeding). Those with two APOE4 genes had an even higher risk.

I attended the Alzheimer's Association International Conference in Toronto in July 2025. A group of doctors gave a presentation titled "Leqembi Two Years Post Approval: Real-World Case Series and Patient Pathway Learnings from Diverse U.S. Clinical Settings." The study includes 15 health care professionals scattered around the U.S. Their initial results presented at AAIC 2025 was for 178 patients.

They reported the study included "patients who are homozygous for APOE4, representative of the real-world". They noted that about 15% of their pateints are APOE4 homozygotes (the technical term for people with two APOE4 genes, heterozygotes is the term for people with one APOE4 gene). So in the "real world", about 15% of the patients receiving Leqembi as perscribed by 15 health care professionals in the U.S. are APOE4 homozygotes. It seems the "real world" group receiving Leqembi as part of this trial are treating people with the APOE4 gene.

As another example, a group of 12 doctors prepared a document titled "Kisunla Appropriate Use Recommendations." The purpose of the document is to guide Neurologists in the use of Kisunla.

Here is what this group of 12 experts recommends for Neurologists on this topic: "The [Kisunla] Appropriate Use Recommendations do not exclude APOE4 homozygotes from Kisunla treatment, but strongly recommend that clinicians proceed with caution in this population. A thorough and careful discussion of risks and benefits of treatment, including direct discussion of the higher risks of ARIA and a comprehensive evaluation for additional ARIA risk factors is especially critical part of the shared decision-making process in this population."

The document goes on to note that besides APOE4 genotype, the risk of ARIA goes up with the number of microhemorrhages in the patient identified by MRI prior to starting anti-amyloid treatment. Two other factors also increase the risk of ARIA: an elevated blood pressure and high starting amyloid levels.

So if you are an APOE4 homozygote with high blood pressure and high starting amyloid levels, you perhaps also have super-high risk of ARIA.

For those interested, below is a link to the Kisunla Appropriate Use Recommendations, on the National of Institute of Health website. Section 5 discusses ARIA risk factors and monitoring.

https://pubmed.ncbi.nlm.nih.gov/40155270/

btrackwell

Thank you everyone for your comments. I have APOE 3. There was someone else who said she had the APOE 4 and her Dr. was suggesting Kinsula. I would question that based on what my neurologist said. Based on everyone's input, I'm leaning towards the Leqembi as it seems like it might be more tolerable with fewer side effects and it addresses the little particles, fibrils, or something like that. Although, I hate that it is every 2 weeks instead of 4 and it requires maintenance dosing. I guess I could pass on the maintenance dosing if I wanted to. Is there anyone who is on the Kinsula? How well are you tolerating it? Does it seem to be working?

Thanks

LBC83

https://alzconnected.org/discussion/comment/264018#Comment_264018

One nit-picky comment - there is no "requirement" for maintenance dosing with Leqembi. Any patient can chose to use Leqembi just like Kisunla - stop treatment after amyloid plaque clearance. This can easily be determined now-a-days with a simple FDA-approved blood test which determines the amount of amyloid plaque in your blood (which studies have shown correlates very well with amyloid plaque in your brain).

As an alternative to stopping treatment, Leqembi provides the option to switch from bi-weekly infusions to infusions every 4 weeks for maintenance dosing. As you note, the idea is that although amyloid plaque has been removed, amyloid protofibrils still continue to form and they are also damaging to neurons. Now-a-days, there is an additional option with Leqemb regarding maintenance dosing - instead of infusions every 4 weeks, you can switch to weekly subcutaneous injections (IQLIK). This can be self-administered at home with a small device like an EPI-pen.

I completed my 18 months of bi-weekly Leqembi infusions, and have now switched to Leqembi maintenance dosing. My Dr's office is in the process of trying to enroll me in IQLIK. This is turning out to be no small matter with my health insurance company. So for now, I'm receiving Leqembi infusions every 4 weeks, until the paperwork gets completed and I can switch to IQLIK for maintenance dosing (and say goodbye to infusions!!!).