Apo-e4 heterozygous newbie

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
jordansmom
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Apo-e4 heterozygous newbie

Postby jordansmom » Sun Apr 15, 2018 1:38 pm

I am a married, 48-year-old female scientist living in Arlington, VA. I just found out I carry one copy of the apo e4 allele via a 23andMe home DNA test. I don't know my full haplotype or status of any of the other genetic risk factors for AD, early-onset or late-onset. I do have a family history of late-onset AD: my paternal grandmother was diagnosed when she was ~80 years old and died of it when she was 87. My dad is 78 years old, but, AFAIK, he has not been diagnosed with dementia of any type, although he tells me that, when he was either in his late 50s or early 60s, an MRI scan had shown that his brain had shrunk, and he's lost points on an IQ test administered at the time. He'd originally gone to the doctor with a complaint about being unable to remember people's names. His dr put him on Aricept, which he quit shortly after taking it due to side effects. He was employed at least part-time as a mechanical engineer until he was 72, after which he hasn't worked. My guess is that my dada does have late-onset AD, but that the progression is very slow. My mom, and her side of my family, have no history of AD. They do have an extensive history of heart disease, though, with the women in the family dying early of heart attacks.

I'm a Ph.D toxicologist by training and did a rotation through an AD lab during grad school, so I'm familiar with the medical literature of the pathology and pathogenesis of the disease. I'm hoping that connecting with people on this forum will give me information on clinical trials for which I might be eligible, as well as practical tips for mitigating the genetic risk of late-onset. So far, my strategy has been (since my 30s at least), to keep my weight stable and within normal range; daily, intense exercise; keep to as healthy a diet as I can (lots of vegetables, beans, whole grains, flaxseed, nuts, small amounts of lean protein; staying away from sugar, sat fat, fried foods, junk); and refraining from smoking or binge-drinking (I do like my two glasses of wine a night, though). I try to get as much sleep as I can, but I have difficulty due to RLS and tend to wake often during the night. My cholesterol is high too--~260--although most of it is HDL. I'm thinking about asking my GP to put me on statins, as I've heard statin us diminishes AD risk. I'm also on a very low dose of Effexor, which I've been taking since 2007; I've also read that SSRIs (low-dose Effexor is SSRI-like) may be neuroprotective, although other studies conflict.

Anyhoo, that's about it. Glad to be here.

Cas
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Re: Apo-e4 heterozygous newbie

Postby Cas » Sun Apr 15, 2018 3:18 pm

Hi Jordansmom ,

Thanks for making your first post with us and welcome! It sounds like you are already taking lots of positive steps with your lifestyle and have a lot of knowledge about APOE4 and the strategies to support your health (the sleep one is tricky for lots of us for various reasons - for me it’s a bed swapping 5 year old daughter who wakes me up every night!).

A great starting point is to read through our primer which can be found in the getting started section here :

viewtopic.php?f=33&t=1418

It was written by Stavia one of our members and contains a lot of really useful information.

Enjoy reading through the site and take care.
Catherine
Functional Medicine Coaching Academy Student

NF52
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Re: Apo-e4 heterozygous newbie

Postby NF52 » Sun Apr 15, 2018 5:11 pm

jordansmom wrote:I am a married, 48-year-old female scientist living in Arlington, VA. I just found out I carry one copy of the apo e4 allele via a 23andMe home DNA test. I'm hoping that connecting with people on this forum will give me information on clinical trials for which I might be eligible, as well as practical tips for mitigating the genetic risk of late-onset. I'm thinking about asking my GP to put me on statins, as I've heard statin us diminishes AD risk. I'm also on a very low dose of Effexor, which I've been taking since 2007; I've also read that SSRIs (low-dose Effexor is SSRI-like) may be neuroprotective, although other studies conflict.

Anyhoo, that's about it. Glad to be here.

Hi Jordansmom!

Jordan is a lucky child to have a mom who has taken excellent care of herself and is calm enough to be thinking already about how she can manage the news she "just got" in ways that will help both her and others (in clinical trials). Being a Ph.D. toxicologist sounds like great training to look at scientific claims about Alzheimer's disease and its prevention with an informed, yet skeptical eye. (And along the way, you can help those of us who were English majors decode some of the mysteries!)

Since you probably have institutional access to any scientific journal you could want, I won't presume to tell you which to go after. But I will share some articles I found helpful, after I learned of my 4/4 status at the age of 62, 4 years ago.
As for clinical trials of investigational drugs for prevention, you're (luckily) still too young for those. An advanced search on ClinicalTrials.gov for trials recruiting healthy volunteers within 50 miles of Arlington for Alzheimer's research didn't turn up any that went down to age 48; the youngest was 55. I am in the Generations 1trial for 4/4's who are between 60-75 and still cognitively healthy, which has an arm for CAD106, an immunotherapy drug, and CNP520, a BACE-1 inhibitor. I am in the BACE-1 arm, although of course I don't know if I'm in the 62% who are receiving the drug or the 32% who are an important placebo control group. A similar large scale trial of a BACE-1 inhibitor, called the EARLY trial, is now enrolling people with Apoe 3/4 and 4/4 ages 60-85 in the US after starting a few years ago in Europe and will likely also have preliminary results in 2024 or so. Other trials, in other areas of the country, include studies of the MIND diet, yoga, and other lifestyle interventions.
By the time these trials report out results in 5 years or so, you will still be young enough to benefit if they show significant results in biomarkers of clinical progression before MCI or AD, or in rates of conversion to MCI and AD.

Right now you are at a great age to continue the healthy habits you've maintained thus far, and may want to check out this lengthy forum thread on the subject of hormone replacement therapy for future reference: Hormone Replacement Therapy for E4 Women

BTW, I have family in nearby Alexandria, so can say with confidence that you live in a great area to access cutting edge research centers and medical professionals who can support whatever steps you decide to take. Enjoy your second, unofficial Ph.D training topic, and enjoy being Jordan's mom!
4/4 and still an optimist!

jordansmom
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Re: Apo-e4 heterozygous newbie

Postby jordansmom » Mon Apr 16, 2018 2:50 am

Thanks, cas and NF52, for your posts--your tips are much appreciated!


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