New to forum: 4/4 with positive plasma pTau217

[california99]

Hello everyone,

Joined forum today. I am 65, 4/4, normal cognition (for now!), got my plasma pTau217 'positive' results yesterday with a value 0.82 (A test result >0.63 ng/L is positive and is consistent with a positive amyloid PET scan with 95% positive predictive value). My neurologist is setting up a PET amyloid scan and MOCA testing. Since this is Day 1 for me with a positive result, feeling anxious with many questions....

1. What does this mean? Do I have Alzheimer's?
2. As I am 65, 4/4, his would be early onset Alzheimer's, what is my life expectancy? 5 years? 10 years? more?
3. Should I follow the Bredesen Protocol? Can that stabilize or reverse disease progression?

Thanks for your guidance!
Jimmy

[NF52]

Hello everyone,

Joined forum today. I am 65, 4/4, normal cognition (for now!), got my plasma pTau217 'positive' results yesterday with a value 0.82 (A test result >0.63 ng/L is positive and is consistent with a positive amyloid PET scan with 95% positive predictive value). My neurologist is setting up a PET amyloid scan and MOCA testing. Since this is Day 1 for me with a positive result, feeling anxious with many questions....

1. What does this mean? Do I have Alzheimer's?
2. As I am 65, 4/4, his would be early onset Alzheimer's, what is my life expectancy? 5 years? 10 years? more?
3. Should I follow the Bredesen Protocol? Can that stabilize or reverse disease progression?

Thanks for your guidance!
Jimmy

Hi Jimmy!

Like you, I have ApoE 4/4. In 2017 at the the age of 65, I had a PET scan for a clinical trial of an early type of anti-amyloid drug. I learned in 2020 after the trial ended early, that my result was an "elevated" level of amyloid plaques--but normal cognition on tests I took between 2017 and 2020. On a PET scale called "centiloids", I was at 40 centiloids or above (I never was told the exact number). Between 20-39 centiloids is "positive, but intermediate level". Your blood test means you are "very likely" to also have a positive PET scan, and your doctor probably now wants to know if your level is "intermediate" (i.e. only slightly above a "negative" result) or "elevated."

Today I am 72, and have had two more PET scans, with the one in 2021 confirming "elevated" amyloid and the one in 2023 not disclosed, because I am in a clinical trial of the FDA-approved drug lecanemab. Researchers hope to find it lecanemab can not only remove amyloid but also keep people from progressing from "normal" cognition to "Mild Cognitive Impairment" for 4 years or more. I'm in Year 4 of that trial, which probably won't have published results until about 2028 when everyone in it gets through 4 years. But so far I still have normal cognition and I know several people who also are in the trial and have normal cognition, even with a 50% chance that we are on a placebo, not lecanemb.

I hope I can answer some of your questions:

1. What does this mean? Do I have Alzheimer's? The p-tau test and a PET scan DO NOT mean you have Alzheimer's dementia, or Mild Cognitive Impairment. The blood test does mean it is "very likely" that you have amyloid plaques, one of the "biomarkers" associated with Alzheimer's diseasea Because many people with none, some or elevated amyloid have been followed in a large study for the last 20 years, we now know that amyloid accumulates VERY slowly for 10-20 years in most people, and then for reasons not yet known starts accelerating. But just like with coronary plaques, having a biomarker of a disease (like heart disease) is not the same as having the full symptoms of that disease (like MCI or dementia, or a heart attack).
Most Alzheimer's researchers believe that a "positive" p-tau test is a sign of early stages of the process that MAY, but is not certain to lead to Alzheimer’s clinical impairments. Right now they ALL admit that we don't know enough to make predictions for a specific person. Another term for this stage and one that applies to me for the last 8 years, is "preclinical Alzheimer’s disease." Every day researchers are learning how to intervene at this stage, including with suggestions for lifestyle changes, like exercise, a healthy diet, working with your doctor on any other issues you may have (high blood pressure, low thyroid, high LDL cholesterol, etc)

2. As I am 65, 4/4, this would be early onset Alzheimer's?
You do NOT have early onset Alzheimer's, even if you find out after the MOCA test that your score is within the wide range considered Mild Cognitive Impairment or MCI. At the MCI stage, people may know that they have slight difficulty with some tasks of memory, language, finances, navigation, planning, organization, social activities, etc. but most of their friends would NOT be aware of those differences. Early Onset Alzheimer's Dementia (EAOD) is when people have a diagnosis of actual dementia and are younger than age 65. Most researchers only use that term for people who have a strong family history of a diagnosis in the 40's or 50's,, or "familial Alzheimer's dementia" and have rare and different genes than APOE 4/4.
Some people DO get diagnosed with Alzheimer's dementia in their late 50's or early 60's and doctors sometimes call this "Young-Onset Dementia". because it looks like a similar disease to Alzheimer’s after 65. Those people may have other risk factors in their DNA or in their life, like traumatic brain injuries or exposure to toxic chemicals.

What is my life expectancy? 5 years? 10 years? more?
Your life expectancy is probably similar to what other people your age expect: another 20 years or so, especially given advances in science and support for prevention. It's only when someone has an actual diagnosis of dementia, with significant changes in their thinking and need for daily support, that their life expectancy may be about 7 more years. But I know two women who are about 90 and have lived with the diagnosis of dementia for 20 years and are at home with their families. Scientists call this "cognitive resistance and resilience"--meaning some people's brains seem to be great at workarounds for changes in brain function and in resisting the progression of the disease to more areas of the brain. People who have strong social supports (friends and family), a purpose in life (hobbies, time with the grandkids, learning something new) and have a generally optimistic outlook (or treat any pre-exiting mental health issues such as anxiety disorders, PTSD, depression) have many more years of a good "health span" regardless of their "lifespan".

3. Should I follow the Bredesen Protocol? Can that stabilize or reverse disease progression?
Only you can decide whether, or to what extent, the Bredesen protocol makes sense for you. It sounds like you are somewhat familiar with it, and you may want to look at our Primer, which was written by a doctor with ApoE 4/4 and a history of two serious brain injuries, who summarizes and explains many of the ideas in the Bredesen protocol. Below is a link to her list of key strategies which she expands upon in separate sections. She prioritizes controlling or reversing insulin resistance (similar to a glucose score, but a more precise measure of inflammation that may affect your overall brain and body health.

1. Lowering insulin resistance.
2. Exercise
3. Sleep
4. Stress management
5. Eating a healthy diet with heaps of micronutrients.
6. Cognitive enhancement
7. Social enhancement
8. Selected supplements
9. Reducing inflammation in your body.
10. Avoid Smoking
11. Avoid having high blood pressure
12. Avoid hitting your head hard enough to sustain a concussion.

An introduction to...prevention strategies

If you have some questions about your thinking, reasoning, memory or visual-spatial skills, you may want to ask your neurologist for a referral to a neuropsychologist, or contact your regional Memory Care Center. Neuropsychologists can provide a more precise picture of what your strengths and areas of relative weakness might be. (I draw like a 6 year old, but since I've always been that bad at drawing, I don't sweat it. But I'm not as great at remembering the plots of books I read last year, although that seems to be "normal" for my age.

We hope you have family or friends you can talk with about all of this. We're your genetic "family" too and hope you feel a valued and welcome member.

Nancy

[california99]

Dear Nancy

Thank you for your very comprehensive response! I have been anxious all weekend trying to research online without getting good answers. You have very thoroughly addressed all my questions, for which I am most grateful. Wishing you all the best for a very healthy and happy life!

Warmly
Jimmy