I have been waiting for this: FDA Approves Amyvid(TM) (Florbetapir F 18 Injection) for Use in Patients Being Evaluated for Alzheimer's Disease and Other Causes of Cognitive Decline
full story here: http://www.marketwatch.com/story/fda-approves-amyvidtm-florbetapir-f-18-injection-for-use-in-patients-being-evaluated-for-alzheimers-disease-and-other-causes-of-cognitive-decline-2012-04-06
I am going to call Monday to find out where it will be available starting in June: "Because Amyvid loses over half of its radioactivity every two hours, Amyvid must be distributed directly from a radiopharmacy to the imaging centers where it will be administered within several hours. Beginning in June, a limited number of radiopharmacies will be distributing Amyvid with the goal of making the product available in more areas as soon as possible. "
Then the trick will be getting my husband to go for the scan. He has decided he is never going to the doctor, that way he can't possibly be told he has Alzheimer's, therefore he won't ever have it.
But this could be so helpful with the driving issue and the "maybe it's really time you just retired" issue.
I find it difficult to understand any excitement. My reading is, this is just a diagnostic tool that enables MDs to do little more than PLACE a label the symptoms we're all dealing with a more precise name. The weapons in the armory to fight the battle remain woefully inadequate. Current med are just barely able of fighting a delaying action and at their best, able to mask or surpress the pain of the relentless destructive nature of this disease process /condition/syndrome... what ever label they choose
True Nelson...BUT...if there's some question that it "might be" Alzheimer's, but you have a neurologist/psychiatrist/PCP who are unwilling to contemplate the possibility in "such a young person," then MAYBE just doing this scan would save you from another 3 years of no diagnosis and no idea who to see next. (our personal story.)
I am 52 years old with one of my sons, a teenager, still at home. For us, the label would not lose value simply because the doctor cannot follow-up with a pill.
My life, my son’s life, and my DH’s life, would have been a whole lot easier had the doctor been able to order this PET scan after my DH’s diagnosis of MCI 18 months ago. DH’s MCI diagnosis left us in limbo to a large degree. My husband, although initially devastated, later convinced himself there was nothing really wrong with him. Since then, his cognitive impairments have become undeniable even to him. So he has made adjustments, but is still in many ways in full blown denial, and flatly refuses to follow-up with the neurologist – he has vowed never to take those neuropsych tests again. But just maybe the family physician can convince him to have one of these PET scans.
And why does it matter? #1 - I don’t think he should be driving. #2 - He is still working and there are hundreds of people who depend on him for a living. He is 90% of his company’s sales, and his sales have slipped 20% so far this year. My guess is that trend will continue (my son and I are amazed that he has held onto his job this long, given the level of confusion and problems reasoning that we see at home). Yet, DH will not consider retirement. If he had this scan and it showed AD pathology as the reason for his cognitive impairments, he and the company’s owner could plan for a transition before the company goes under. But if he just continues to decline and continues losing customers – there may be a lot of people out of work. People with bills to pay and kids to feed…
As I understand it a number of people are given the MCI dx in the beginning and then within six months or a year as things become more clear in their decline and noticeable actions they change the MCI dx to AD. But, in your case if you dh has refused to go back to the doctor it is difficult to get a real dx. Has your dh had an MRI? Except for the driving which would worry me to death with the possibility of a major law suit if an accident happened, if the people he works with see no problem then I wouldn't worry about that too much.
Hope your dh agrees to the test and hope that he agrees to have the test. Not knowing the dx would really drive me nuts. I do think the AD drugs that slow down the condition have helped my dh alot. He was dxed in 2007 and is still very functional most of the time and he just turned 65. Could be alot worse. Good luck to you.
Existing PET scans can detect frontal lobe dimentia...just not if it is ALZ. or some other form. Over time, I believe 75% of frontal lobe dimentia diagnosis have proven to be ALZ. ..other types, as I understand it, are equally untreatable, have similar symptoms and have the same end result. I do hope this new diagnostic tool will be used sooner and allow for better treatment sooner than is currently the case w/the medical community.
I would think that any device that can more precisely diagnose the type of dementia might be of value to researchers looking for treatments/cure, as well. The more guesswork that can be taken out of this whole sad situation has to be a good thing overall.
Happy Easter to all and the MarilyninMD I fear a cure for AD being round the corner ranks right up there with the cancer cure.. tiny baby steps all too late of us
To All: My wife's mother had Alzheimer's and suffered with it throughout most of the 80's She died not of A,D but of pneumonia. We elected to withhold antibiotics and let the Good Lord put an end to her torture. A life of being bound to a chair, incontinent, unable to speak, other than animal like cries of pain or move doesn't not rank too high by any Quality of Life standard. My wife was diagnosed with AD in 2008, symptoms had been present long before (The old line, Denial is not just a river can be applied here). My wife has been treated by highly regarded Neuro's at Mt Sinai and Columbia Pry. in NYC and here in FL.At least one other on this forum used the same research Neuro as we do here in FL. The diagnosis was so apparent in 08, she was immediately accepted in three new Alzheimer's drug trials. We are now in 2012 I no longer chase rainbows, I have adjusted to a bottom line that she has an incurable disease. My efforts are focused on maintaining as normal an existence as possible. I joked calling myself Mr. Tim as I plucked her chinn, washed and blew dry her hair, applied her makeup and dressed her for an elegant Passover Seder at a restaurant with friends the other night. Seated across from her, I had to have a neighbor cut her food, etc. but all know us and do far more than just tolerate the situation they're anzious to help in anyway possible.
We have two daughters in their 40's. They are mother's our four grandchildren, two boys and two girls. Our daughters have been offered genetic testing on numerous occasions by different research teams, all with the caveat; if you do have Alzheimer's, gene indications there is nothing we can do help you. All that they can say say live a health life. Neither daughter elected to undergo genetic testing. (This statement has come from several program directors one within the NIH, another In TX and at major Chicago and NYC research. One daughter developed a totally irrational terror of Alzheimer's when she was told that she was 15 -20 lbs overweight and losing the weight may cut down on her risk, she was not "morbidly" over weight. She hadn't lost her "baby fat" from a delivery 6 mos prior. She did not qualify for the surgery by any standard, but there is always a doctor who will be happy to take your money. She paid cash to undergo barbiatric surgery. She has now lost over120lbs and is going to have to undergo a second surgery to enable her to put it back on. She cannot eat enogh to maintain a normal wefht. Placing a label on the UNTREATABLE syndrome or disease process all with the similar symptoms we are all so well aware of, may enable the medical researcher more definitive in his diagnosis. It does absolutely nothing for the caregiver on the firing line. All of us are sacrificing and adjusting to how much of a martyr do I choose to be. Labeling the casue of what I know to be my day to day m
Marty, welcome to Joan's place. As we say, sorry you have to be here but glad you found it.
No, I don't anticipate a cure for AD round the corner and yes, even any new treatments that are stumbled on may be too late for those already diagnosed. However, I have hope for future generations.
Early in this journey, I was very disgusted that little progress had been made in the treatment of AD since my father-in-law died of EOAD in the 1960's. But as the disease progressed in my husband, I realized that I was wrong. He has been on anti depressant and anti psychotic drugs, which did not exist way back when, for about 7 years now. They have not only improved his quality of life, but consequently, also made this ordeal bearable for me. My FIL had to be institutionalized because he was uncontrollable at home, and died in the facility as a result of an altercation with another patient. In contrast, my husband is now well medicated and content living in a dementia-specific ALF. Is it the life we anticipated? Absolutely not. But it's not the horrible ordeal his Dad and the family went through either, because of advances in medical treatment and good planning in the past by my husband for this possibility.
What is forgotten is that THIS is the first step toward a cure! (OR prevention OR delay at least)
Compare AD to cancer. How long would it take to develop chemo or radiation therapies if there was no way to see if the tumor was getting bigger or smaller? What if you treated cancer and couldn't see if any your therapies had done any good until the patient died?
THIS is the value of being able to image the amyloid. Give drugs visualize, give other drugs,visualize again. Are they doing any good?
Of course there are two parts to AD and we cant yet see the Tau destruction . . . BUT when we do . . . . ?
I do know this interesting tidbit about the amyloid plaque PET scans-- Apparently, even in the variants of Alzheimer's (such as posterior cortical atrophy, which is Jeff's version,) the amyloid distribution will show up in essentially the same pattern. IOW, if Alzheimer's is the underlying pathology, then the amyloid distribution will attest to that.
On the other hand, in variants such as PCA, the classic PET scan which highlights areas of the brain in which glucose is being inadequately metabolized, the pattern will match the observed deficits the patient is exhibiting. So, if the problems you're seeing are more visual at the outset, then the parietal lobes will show a relatively greater loss of glucose metabolism compared to textbook AD.
Info I got from discussing Jeff's assorted scans with the doc at NIH who was conduction the study. Jeff fit his study group exactly as described.
"Existing PET scans can detect frontal lobe dimentia"
My wife is diagnosed with FTD and nothing showed up on her PET scan. Or MRI or CAT scans. The memory specialist neurologist was shocked that he didn't see major atrophy based on her behavior. That was 3 years ago and we have no plans for future scans since she has a dx and we have made changes to our lives.
If she didn't have a dx I would be pushing for scans on an annual basis. Or if there is a major advance in scanning technology and her neurologist suggests it we would go for a scan if it would help us better understand where she is on her path.
One article I read that I thought was very interesting is that the amyloid plaques may not be the disease at all!
Neuron destruction yes, but the plaques may just be the scab (scar) that formed on a much deeper wound (pathology) So, image and see amyloid plaques and you may be able to see the 'effects' of the disease but we might not yet be able to see the disease itself.
Is head injury (concusion) a cause of AD? If we can image soldiers and NFL players perhaps we can watch the formation of plaques (or no plaque development) and make or dispell the connection.
Another value to this imaging is STATISTICS: When does AD actually start? months before symptoms? years before symptoms? decades before symptoms? With imaging we can watch the damage progress
How many people actually have AD? Since we can only Dx it based on behavior we think that plaques always lead to the disease. What if there were thousands of people walking around with their heads full of plaques, that have no behavioral symptoms?
AD is now the #5 cause of death in the USA because it is (FINALLY) being listed on death certificates. If we can do wide scale imaging we could maybe find out that AD affects more people than heart disease. If this is true THEN the money and power to do research would start to roll in. Jim
I read, I think 1 or 2 years ago, that they think the plaques form to protect the brain, so the medications aimed at reversing AD ended up doing the opposite. The articles made a big impression because it meant that all of the AD medications under development may have to be scrapped.
The plaques get all the attention because they have developed mice that 'grow' AD plaques. You can then very easily experiement on the mice to your heart's content. All the research dollars are subsequently poured into looking at the damage that is most easily seen.
Unfortunately we do not (yet?) have mice that replicate the Tau destruction. If we did, then certainly there would be more experiments and discoveries realted to Tau. So for now amyloid gets all the attention.
Along this same line of thinking are the stated purposes of the two major AD organizations; The Alz Assoc wants to "cure" AD so their focus is on research. Something we might benefit from in the future. The Alz Foundation is less interested in a cure and instead promotes better "care". Something we could all use right now.
Where should the time, money and effort be placed? In all cases AD sucks!
m-man - they have found many people on autopsy that have the plaque but never develop AD or dementia. So there is another factor involved.
I have had my husband on tumeric for a couple years. They announced a few months ago they were starting I think 3 studies on it - the curcumin in it. I started my husband on it after reading about a small study in S. Korea that showed promise. The studies starting recommend 400mg x 2 along with Vit D. I have no idea if that is responsible for the improvement or not, but I don't plan to stop any time soon. He drives to places we have not been too since last year with far fewer questions for directions. He does things around here that surprise me he remembers. Is it a cure? Probably not, but if it improves his symptoms for a while, then so be it.
It was so frustrating to watch Medicare’s meeting yesterday – they were discussing whether to approve beta amyloid PET imaging. They basically rejected it. Technically, Medicare could ignore the panel’s recommendation and approve the scan anyway – like that’s going to happen!
The panel’s objections included (and I am obviously paraphrasing somewhat):
- Oh my gosh! Are you kidding me? I would have every baby boomer in town marching in demanding this scan because they misplaced their car keys! It’s going to be like colonoscopies!
- Heck - why bother? We’ve got cheap generic AD drugs that are harmless. If there’s any suspicion of AD – just medicate. You don’t need to know for sure.
- People can have amyloid plaques and not have AD. So a positive scan is meaningless. What difference will it make?
I wanted to throw my show at every one of them! It was so sad to see the level of ignorance in this group of people who were making this decision….I won’t go into all the details but trust me – it was sad.
Dr. Amy Sanders, one of the few voices of reason in the room, pointed out that the panel was creating a social disparity in treatment. Wealthy people will be able to go out and get the scan while the poor and middle class will be left undiagnosed and untreated.
As angry and frustrated as I was, all I could think when watching these heartless bureaucrats was, “I sure hope you are never in a position to find out just how helpful this scan would be to your family."
I understamd how you feel. However, I would venture to say that most on here never had pet imaging and was dx by their spouse and confirmed by a doctor within a few years of strange behavior. Thus they were given medication. What would they do with the information now?? Do they have some different medication they can give to improve AD or slow it down or reverse it that we don't know anything about? What different treatment was Dr. Sanders referring to that would be different then what is available now that some might not get without this imaging? I feel my dh got everything that was available.
My dh had two MRI and both showed very little and the second showing minor problems. His medications were never changed and he passed within 18mos. of the last MRI.
Please help us to understand since you are upset about this. How do you think this would help?? Did they discuss anything about new medidations?? Everyone wants the best and most that is available....but what is "new" that is available that would help persons with AD is the bottom line. Just having a test doesn't help if there is nothing new available. I would be interested in knowing if the discussion included what would change in the treatment/medication after the scan. Sorry you are upset this is such a hurtful condition for the spouses....hugs...hugs.
Early on (about 2009), the neuro ordered a PET scan and my insurance (Blue Cross/Blue Shield) would not pay for it so it was not done. At that time our dr. said Medicare would have paid for it if Medicare had been our only insurance. Both insurances said that there was no value to be had from the PET scan since he was already dxd. Oh, well. It changes nothing. If someone could have shown me something that could have altered the progression of this disease, I would have fought for it. I would like to some more studies on the use of electro-shock therapy and if it is possible to blast some of the amyloid plaque build-up off the neurons and if that could bring about any improvement. I have tried every kind of herb and supplement out there from Focus Factor to CoQ10 to magnesium to Chinese moss extract to Maitake mushroom extract to Huperzine A. he still has AD. He is still getting worse. And he is still going to die. There is still a lot to be said for Dr. Kevorkian. Of course, that wouldn't work for us either. (Oops. Sorry again. That damn Linda Mc just says too much!)
Why would I want my DH to have this scan? Simply to know whether or not he has Alzheimer’s disease.
Why does that matter? The answers to that question would have been different for me at different times since DH was diagnosed with MCI (multiple domains). And I am sure the answers are different for different families. Here are some reasons it currently matters to me:
#1. Driving: My DH should not be driving. I do my best to keep his driving to an absolute minimum, but the fact remains, my DH is still a licensed driver. Even though an Alzheimer’s diagnosis would not mandate license surrender in our state, it would allow the doctor to order a driving assessment and my DH would be formally bought into an assessment/ review process for his driving privileges.
#2. Working: My DH should not be working. His company might have been better off if my husband had been given this PET scan two years ago – before he lost 30% of his sales/clients. They would have been able to plan and execute an orderly transition. Instead, he continues to work, continues to decline, and may very well be taking the company down the tubes. There are over 300 employees and their families who are depending on my DH for their livelihoods (he is responsible for over 90% of sales). I doubt any of them know that last month one of his clients called him a f*cking idiot, or that he can’t do something as simple as update his registration on his virus software, etc. [Note: it is extremely painful to write that as my DH is NOT an idiot. He was, in better times, the top professional in his field.]
#3. Treatment: An Alzheimer’s diagnosis would change the way we are treating my DH’s condition. We would be more receptive to DH trying Aricept, something we wouldn’t consider otherwise. We might actively pursue a clinical trial, something else we would not consider otherwise. Conversely, if Alzheimer’s were ruled out, the doctor could then investigate other causes – vascular dementia, for instance. I am fairly certain an amyloid PET scan would show AD plaques in DH’s brain, but the possibility remains I could be dead wrong about that. Maybe he has vascular issues ; maybe he should be taking beta blockers...
#4. Life: vacations, financial planning, college choices, etc., decisions about all of these things may be different based on whether or not my husband has Alzheimer’s.
I understand people who have experienced a swift progression with this disease, having the opinion – What difference does it make? But for families such as ours, who are relatively young, and who are experiencing slower declines – it makes a difference.
I see the amyloid PET scan as a diagnostic tool no different than the CAT scan that was used to rule out a brain tumor.
I reject the view (expressed by some of the experts on the Medicare panel) that it is okay to throw the same pills at all people who are cognitively impaired because it won’t harm them in any case. I believe that is a lie.
And I adamantly reject the view that a diagnosis only has value if a doctor can prescribe a pill.
Mary22033, anyone who would call someone with Alzheimer's a f***ing idiot is a f***ing idiot. And you can throw pill hurlers in with that bunch, too! There might be a pill for everything, but you can not treat everything with a pill. Hmmm, does that make sense?!?
Linda, In fairness to the client, they have no idea my DH has been dianosed with MCI (which may be due to AD). That's the point. They've always known him as the guy who knows everything about their industry - the guy to go to for expertise - the guy who could recommend changing things here or there to save the client money, etc.
Suddenly this expert is saying things that DO sound idiotic. The client doesn't know there's a reason for that and, frankly, they wouldn't care. They just want their work done on time and as ordered. Sadly, the part of my DH's brain that tells him there is something wrong and it needs to be corrected was one of the first things to go. In the past he would have known that the client's statement meant he must have miscommunicated something or he must have misunderstood the client. He would have known that a statement like that means the account is in jeopardy. Now, he just shrugs his shoulders. Because that's all he can do. His reasoning is gone; his communications skills are shot. He doesn't realize it. Everything he says makes perfect sense to him, but as my son and I can attest, he very often makes no sense at all.
I know the last two years at work my DH was working at 50%. He had a great staff that covered for him. We thought it was depression. I tried so hard those two years to get DH into the dr.
I don't think all meds are bad. And the Namenda is keeping my DH calm and quiet. I would not stop it now and go back to anger and agitation. That was scary for me and DD.
After a few years of symptoms which I blamed on hearing loss and depression , I knew we needed to get to a dr.
Fortunately, living in NYC gave us access to Columbia Presbyterian Hospital's Memory Loss Center. My husband was ordered a Pet Scan among other routine testing for dementia. I felt the testing made a difference for us because I felt more confident that the Dx was correct . Certainly devastating but I am glad I didn't feel like I had to question it or get another opinion. We never incurred any costs and I think Medicare paid for it. If a Dr. Is diagnosing dementia, pet scans should be approved!! That is just my opinion.
It is still a fact that Alzheimer's Disease is diagnosed by ruling out other diseases or problems. Sometimes, testing such as MRI's, reveal brain tumors or NPH, both of which can be treated, with the patient improving dramatically. (Consider - a non-malignant brain tumor that is operable). My father had NPH, and had he not be 90 when it was discovered, he could have had a shunt put into his brain to drain the fluid, and his balance and gait would have improved. (The doctor and the family agreed that at 90, he was not a candidate for brain surgery). However, many younger, healthier people ARE good candidates for the shunt, and when put into place, it often cures the dementia completely.
Some dementia is caused by, unbelievable as it sounds - Vitamin B deficiency. Increasing Vitamin B has been known to cure the dementia. That's the reason for all the blood tests they perform.
My point is that if there is a test that can possibly show a reason other than Alzheimer's Disease that is causing the patient's symptoms, I would go for it in the hope that the symptoms are being caused by something curable/treatable. If it IS Alzheimer's Disease, based upon ruling out everything else, we know there is no cure, no pill, no therapy, that is going to change the outcome of the disease. But wouldn't you want to know if it is something that can be successfully treated?
Is there more than one kind of PET scan for diagnosing AD? I ask because Medicare did pay for Gus's PET scan - just got the confirmation. Didn't pay the whole amount, of course but the dx ctr accepted assignment, leaving about $200 for the supplemental insurance to pick up, which they did. I'm glad to have the dx after 2 years of suspecting. The only thing Gus would accept was an official dx (without "probably" attached) and now we no longer live in denial-land.
The only test Ron had was a test for Lymes Disease because it can have symptoms of dementia. It turned out he had it and went through a long series of infusions of a powerful antibiotic through a PIC line. Needless to say it didn't cure his AZ symptoms.
Yes Button, there is more than one type of PET. The one I am discussing, AMYVID, was approved last spring by the FDA. The amyloid beta plaques that always exist in AD show up on the scan. So the old saying that an autopsy was required to be certain of an AD diagnosis is no longer true. This scan shows the plaques that once could only be seen by autopsy. Technically - it can not diagnose AD - only rule it out. But practically - if a patient has already been diagnosed with MCI and the scan is positive - they've got AD. It has been used in research for years and is now available to patients. The problem is - it is very expensive and currently not covered by insurance. The insurance companies usually follow the Medicare lead.
I know there are other PET scans that can help diagnose AD, but they are not always definitive. Within six months of my DH's MCI diagnosis, he had decided there was nothing wrong with him and he was never going to go to a doctor again. I have to hand it to him, that's one very successful strategy to never get an AD diagnosis :) So I never pushed for the other PET - though we have had several very heated arguments about his refusal to follow-up as directed by the neuro. As you all know - I can not win that battle.
In the meantime, I've been praying for approval of this more definitive scan. Guess I should have been more careful and prayed for approval and a pot of money - LOL!
Fortunately DH has recently been talking about being overdue for his physical, and that he has to make an appointment. Yay! He has forgotten his oath. I've talked to our doctor and he is going to give my DH a Rx for the AMYVID PET scan (if DH ever actually makes the appointment). I am currently trying to get a free voucher for the test. The manufacturer is giving imaging facilities 3 free scans to pass out to patients as a promotion to get them to adopt the new test.
Oh wow, MaryinPA, you must have been so excited to think your DH's problems were caused by Lyme and cureable! That must have been a cruel disappointment.
my DH also has a great staff covering for him - but I think we are now at the point where even they cannot help. As a matter of fact, some have left the company; they probably see the writing on the wall.
We did go through a year or 2 of that anger and agitation, too. I can handle all the other problems - but that was not fun! Happy to say we are past that.
mary22033 - I can see especially for the younger victims using all the tools out there. I too pray with you to get the approval either through insurance or the free voucher - who cares how you get it, just that you get it. There is always the chance it will show something else which in that case you could through back at those people's faces!
My husband was diagnosed at 59 - test included an MRI, CT scan, neuropsych testing and family history. Ther MRI and CT showed nothing more than normal atrophy of the frontal lobe. So the diagnosis was based on the neuropsych testing and family history. I hate that there is nothing more to warrant the diagnosis. I think somewhere in the back of our mind want it to show up something else, something that is curable. I do pray they will come up with a test to confirm AD, especially in the younger victims (I like victims case they are a victim of this horrible disease).
Unfortunately, I fear refusing test will only get more common in the over 55 group with the Affordable Care Act. And, it will be a panel of non-doctors making decisions.
FYI - information from one of our local imaging centers:
"...regarding the Amyvid scan. The original arrangement with Lily was for the three free vouchers for doses for each of our centers. That program ended at the end of November 2012. We have just been approached by Lily to perform additional Amyvid scans. However, this time there is a cash price to get an Amyvid scan. The cash price is $1200.00. This is the price that has been established until the insurance companies start to offer reimbursement for this study. Hopefully, Medicare will establish their guidelines within the next 6 months. During the period of time that we were evaluating this procedure with the free vouchers, there was definite advantages in helping to identify the Amyloid plaques, especially in helping to establish a negative diagnosis."
I did follow-up and they confirmed that $1,200 is the total cost of the scan - no other charges. Still a boat load of money - but much better than $6,600. Everything's relative, I guess.
They are also now running a clinical trial to gather the data Medicare wants about patients outcomes after AMYVID PET scan (interesting that the trial started last October - I guess they are clairavoyant to know in advance what the Medicare panel would ask for at the January meeting).
No sites in our area - so I guess no free scan for us...