Amyloid PETScan

Anna2022

Hello all,

Doc is talking about an Amyloid PETScan and a regular PETScan as help with diagnosis and treatment planning. Anyone have experience with an Amyloid PETscan? Many thanks.

Iris L.

I had an Amyvid PET scan around 2015 after a diagnosis of cognitive impairment nos. This PET scan determined that I did not have elevated amyloid in my brain and thus do not have Alzheimer's Disease. I had this scan done as part of a clinical trial.

Iris

Anna2022

https://alzconnected.org/discussion/comment/187584#Comment_187584

Iris, thank you! How is it different from a regular PETScan? Is a different contrast medium used? Any side effects? I've read it takes an hour, is this true?

Dio

I think depending on what they are looking for that determines the dye or injection used. For the amyloid PETScan, it did take about an hour for DH.

GothicGremlin

I think my sister had the regular PET scan (although I'm not 100% sure). Her doctor combined the results from the PET scan with an MRI, and that was what led to her diagnosis of Alzheimer's and FTD.

Anna2022

Thank you all for your input!

I've been reading up on these scans.... As best I can tell, the docs need to confirm amyloids exist before giving the new meds and the Amyloid PETscan is the approved protocol to do this? Can anyone here can confirm my hypothesis?

I've also been reading about the newest medications and note that they are given intravenously. The very newest is given 8/9 times (with lab work to monitor) but the second newest is given until it no longer works (also with regular labs). I don't think DH will comply with either of those two administrations and/or it will be a fight every time to get him to the infusion center. His anosognosia is strong.

Thanks again all!

loveskitties

What are the specific iv meds you are referring to? What is the benefit hoped for from them?

harshedbuzz

@Anna2022

You raise an interesting point-- with any test or screening it's critical to ask what you will do with the information. If he'd be miserable with the medication protocol and make you miserable in the bargain, it doesn't sound worth the minimal benefit he might get.

The Alzheimer’s drug lecanemab wins full FDA approval. It’s a very big deal. - Vox

HB

M1

Anna, if we will be impossible to medicate, id ask again about any point. There might be some benefit if you can definitively rule FTD in or out, as certain meds should be avoided in FTD. But sounds like overall the return is going to be pretty small.

Marta

Yes, Anna - any payor would want confirmation of the presence of amyloid before paying for an outrageously expensive anti-amyloid drug.

cavenson

My DH had an Amyloid PET scan done earlier this year as part of a research study to see if studying the retina could determine if someone had Alzheimer's. It's usually a very expensive procedure, but it was free because it was part of a study at a local medical school. They even gave him a small stipend for participating. He also had an MRI done the same day. He had no side effects from it. We even stopped for dinner on the way home. Three radiologists read the scan and all concluded that my DH has Alzheimer's. This scan is used to determine amyloid plaque on the brain and could determine if someone is a good candidate for the new meds. In my DH's case, they offered to put him in a study for two years where he had a 35% chance of getting a placebo instead of the intravenous med. We decided against it.

Anna2022

https://alzconnected.org/discussion/comment/187618#Comment_187618

The newest drug is Aducanumab. https://www.alz.org/alzheimers-dementia/treatments/aducanumab

The second newest drug is Lecanemab (Leqembi®) https://www.alz.org/alzheimers-dementia/treatments/lecanemab-leqembi

Anna2022

@M1 and @harshedbuzz You both speak the truth!

If insurance will pay, however, and these tests will give us a better dx, I'm leaning toward getting at least one so that the dx might be a bit more clear. I also want to keep his medication options open should things change.

harshedbuzz

@Anna2022

Right now Medicare is covering Leqembi at 80% which leaves an out-of-pocket cost of about $5K a year. It is indicated for those with MCI or ES Alzheimer's, so this might not be a situation where it remains an option for long. It looks like the infusions would be every 2 weeks going forward. There is some buzz that they may be able to switch from an infusion to a shot in the future.

HB

Anna2022

https://alzconnected.org/discussion/comment/187651#Comment_187651

Thanks for the info about a shot in the future. I had not found that information in my research! If a shot were avaialble now, my DH might be a candidate but my guess is that there would be mountains of trouble to to get him to attend every couple of weeks for any length of time.

You are right about insurance coverage for Leqembi and that the window for this med is a small one and as time marches on, that window will close.

harshedbuzz

https://alzconnected.org/discussion/comment/187663#Comment_187663

ETA: Infusion time is said to be an hour currently. The first infusion appointment would last a bit longer as they'd want to make sure he wasn't going to have an adverse reaction. The website says these will be offered in-office or in an infusion suite. I have a friend who does monthly IVIG infusions for immunity issues. She has a visiting infusion RN come to her home to do it which she prefers to the infusion suites which can be busy and noisy.

HB

Anna2022

https://alzconnected.org/discussion/comment/187736#Comment_187736

Such good information to know. Thank you!

Iris L.

https://alzconnected.org/discussion/comment/187586#Comment_187586

Anna, frankly, I don't know the answers to your questions. Except to say, I had no side effects.

Iris

SDianeL

Unless you're doing it to get into a trial, I would ask what benefit. Just getting a better diagnosis doesn't help in my opinion. My DH was diagnosed 2 years ago with Dementia - probably vascular based on a CT Scan. He can't have an MRI. I asked the Neurologist about a PET Scan and she said it was possible but we should weigh the benefit vs putting him through it. So I decided against it. He was already passed the Stage for a drug trial. For the last year I have kept a list of my DH's behaviors and sent them to all his doctors. The last time I sent them the Neurologist called me back and said that she looked at his last 2 CT Scans and looked at my list and changed the diagnosis to Alzheimer's-Posterior Cortical Atrophy based on the list of behaviors I sent her. Since there is no treatment or cure except to manage the behaviors, she referred my DH to a Geriatric Psychiatrist to manage meds.