EOAD and Amyloid PET Scan

Lgb35

DH just saw a new neurologist and she is trying to get an amyloid PET scan for confirmation of EOAD or FTD. MMSE is showing he is in stage 2 with mild dementia. No longer in the MCI category. Have any of you had the scan? Did your commercial insurance plan cover it? The doctor said it will reveal EOAD so we can talk about treatment options or it will rule out EOAD and we are looking at FTD.

GothicGremlin

Hi there @Lgb35 My sister had the PET scan done. And yes, the PET scan combined with an MRI was what confirmed her FTD diagnosis. She was also EOAD. If I had to guess, I'd say she was earlier stage 4 when she got the diagnosis. I can't say for sure that the two tests confirmed the EOAD … She was just shy of age 59 when she was diagnosed.

Dio

Best to check with your health insurance about coverage. I think in general they do not cover PetScan.

Timmyd

My DW was recommended to get amyloid PET scan for of EOAD or FTD. Our insurance from my employer told me they would not cover it. The cost was in the range of 5K. We are fortunate to have been able to afford that. The test confirmed amyloid build up consistent with EOAD and that allowed the neurologist to prescribe the standard regiment of oral drugs (donepezil and memantine) for AD. One and a half years later, the radiologist mailed us a check (refund) out of the blue for the cost of the scan. I tried to dig into why we got the refund but never received a clear answer. I was told by the radiologist to cash the refund check.

The insurance coverage for the PET scan is tricky. I think the best you can do is engage with your insurance company and the radiologist and just try to work the healthcare system. Make note of the name of the person you talked to, when you spoke, and what they told you. It is easy to get conflicting information when trying to research this stuff.

Lgb35

https://alzconnected.org/discussion/comment/240436#Comment_240436

did you notice any difference with the two medications? DH has been on donepezil for 3 years now.

Gator1976

sorry, I can’t handle all these acronyms if they are not listed somewhere, just saying………

harshedbuzz

https://alzconnected.org/discussion/comment/240463#Comment_240463

On a laptop, they're listed on the right side of this page under "Commonly Used Abbreviations". On a phone, you can find them when you open the sub-board (like "Caring for a Spouse or Partner") and scrolling to the very bottom of the page.

This is a link-

Common Abbreviations — ALZConnected

Timmyd

https://alzconnected.org/discussion/comment/240443#Comment_240443

Measuring the effectiveness of treatments intended to "slow the decline" is difficult. I felt like my DW plateaued for 6-12 months after starting the meds but then again began to decline. I trusted that our neurologist was very experienced with these medications and his recommendation was to take them if they are well tolerated. He also told me that if we were to stop taking them, we should expect to see an acceleration in decline. I think the effective on any one individual is hard to measure and could vary widely, but these meds have been studied extensively and the consensus seems to be that there is value in taking them if they are well tolerated.

cavenson

It's my understanding that insurance will usually not cover an amyloid PET scan. However, my DH was able to get one at no cost by enrolling in a research study at a medical school. Here is a website from the alzheimers.gov website to help you find out about clinical trials.

Find Clinical Trials

GothicGremlin

You know, I'll just throw this out there, and yeah, everyone is different, but ….. there were many times when I thought my sister plateaued, mostly through stages 4 and 5. But, I always kept detailed, dated, notes - therapist notes, doctor and neurologist notes, posts I made here, posts I made elsewhere, and when I put all of them together into a chronology, I realized (much to my surprise) that she never plateaued. Sometimes meds made her symptoms less severe, but the progression never slowed. It was fast and relentless. As I mentioned, she was early onset, and I've read in many places that early onset, for whatever reason, progresses more quickly, and that was certainly what I saw with my sister.

Goodlife2025

Just a quick comment - with prior approval my DW was able to get an amyloid PET Scan approved through our insurance. We went to Denver this past November. After very good insurance coverage we still have a $5,000 bill.

ontos

I am fortunate my DW has VA plus Medicare so her pet scan this coming June will be paid for.

SDianeL

About Donepezil — used to treat dementia (memory loss and mental changes) associated with mild, moderate, or severe Alzheimer's disease . Donepezil will not cure Alzheimer's disease, and it will not stop the disease from getting worse. However, it can improve thinking ability in some patients.

Sandi Roe

https://alzconnected.org/discussion/72749/eoad-and-amyloid-pet-scan

it took us almost a year to get approval for the Amyloid PET. Insurance sure doesn’t want to pay for it, neither did Medicare. I felt it was so important so I kept asking my doctor to make it work. He finally found an imagining facility that knew how to work the insurance. His was positive with two E4 genes. They also have a blood test now that confirms Alzheimer’s. It’s really important to get the right diagnosis as there are so many trials now. Wishing you the best on this hard journey, Sandi

Lgb35

The neurologist told us the Amyloid PET scan is now the gold standard test for determining if it is Alzheimer’s or not. She said Medicare started covering them in October 2023. I did call my commercial insurance today since we do not have Medicare. It is a covered benefit! We just have to wait for the prior authorization to go through. I am so relieved. I will let you all know when we have results

Sandi Roe

The blood test is for genetic testing. It showed my LO had 2 APOE4 genes, meaning both his parents had the gene. That knocked us out of many trials. His mother and all her sisters had Alzheimer’s, his dad died young. His brother 17 years younger has also been diagnosed with Alzheimer’s.

Gator1976

https://alzconnected.org/discussion/comment/240465#Comment_240465

thank you

Russinator

Medicare covered it for us