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Alzheimer's
With Mayo Clinic health education outreach coordinator Angela Lunde
Miracle cures are hype until proved
Like all of you, I remain optimistic and hopeful that a cure for Alzheimer's will soon come. I personally have family members affected and I witness firsthand, each day, the impact it has on persons with the disease and their families.
I also understand that during this painful journey, we can become enchanted by news of what appear to be miraculous cures; case in point an arthritic drug you may have heard being touted as a "miracle cure."
The drug, approved for treatment of immune disorders such as rheumatoid arthritis, is not currently available as a treatment for Alzheimer's. Keep in mind, this "miracle cure" rests on just a handful of case studies rather than on randomized clinical trials. Before it could become an accepted therapy for Alzheimer's, it would need to go through the FDA approval process, including randomized, blinded clinical trials.
I often receive questions from families affected by Alzheimer's who have heard or read about a "cure" such as the one I described above. While I desperately want to confirm for them that the cure is just around the corner, I cannot in good conscience offer that at the present time. I am saddened by the premature media attention that only builds unrealistic expectations for families who are far better served when well researched information reaches them.
One source for reliable information can be found at Alzheimer's Disease Education and Referral (ADEAR). As a government-funded resource, the ADEAR Center strives to be a current, comprehensive, unbiased source of information about Alzheimer's. All information and materials about the search for causes, treatment, cures, and better diagnostic tools are carefully researched and thoroughly reviewed by NIA scientists and health communicators for accuracy and integrity.
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I did not waste time not telling my mother how loved she was, I would just like her to know it and hear it as she approaches death. Currently it has cost a quarter of a million dollars to keep her in a state of existence, just existence. What is wrong with wanting her to be able to feel the love around her again. The time she has is wasted now, suspended in life with no end in sight and also no hope. Give her one or the other. At this point she has NOTHING to lose. And i know my mother, she would volunteer. Never assume I did not tell my mother she was loved. But those are words that can not be heard enough, especially when you are facing really bad times. Also, the side effects can be bad,but no more severe than dying without a brain.
Back again, For the many who do not suffer from dementia, but are very aware of their arthritis, vision and hearing loss, just how much of the reseach money and medicare/ insurance funding are they suppossed to get? there are far more in this catagory. Trapped with good minds behind blind eyes and deaf ears for years and years. We all have an agenda. Sorry if I don't hop on your band wagon Felicia, I have other concerns about the priorities of the FDA and reseach. People with cancer and severe pain, while totally aware.
Dawn, with all respect, I offer my condolences that you waited so late to tell your Mother of your love for her and to hear her speak your name. I heard my Daddy scream my name in great pain as he suffered. Go ahead, trade dementia for lymphoma and get your wasted chance back at her expense. You are selfish.
I have watched my mom deteriorate over the years with AD. For the last several months she has not recognized me. i do understand the need for further studies but in my opinion, Mom has nothing but along, drawnout, undignified passing at the point.Our family feels with this disease it would be worth any risk just for the opportunity to have her for even a week, to have a chance to tell her how much she is loved and to possibly hear our names come from her lips one more time. Yes, my motives are purely selfish but the alternative is much worse, hand feeding her daily, changing her depends, giving her baths, dressing her like a Betsie Wetsie doll. If i know my mom, she would have her hand up as the first guinnea pig in the study group. It reaches a point where the risks are worth it.
Sorry, didn't budget my space. Ca-ching, break the bank. Pull out the card and fork it over, The docs involved and the drug company involved don't want tests and approval, they want everyone to sign a release and be off the hook. FDA approved fen-fen, Vioxx, others, but when the negatives surfaced, who got sued?? Not the FDA. As long as it is off label, and you sign that release, who you gonna sue, Ghost Busters? That is how Dr. T likes it. That is how amgen likes it. You may work around it, find a doc who will prescribe enbrel for a labeled use, surely the patient has some sign of psoriasis or RA. You say, ahh, bad reaction at that injection site. Use this one. Done.
I used to think just maybe Felicia worked for Dr.T., but no more. Dr. T doesn't want the FDA approval that she is pushing for.
I have tried to follow the discussion about this treatment for the past few months. Many things bother me. First, the diagnosis of Alzheimer's is not always correct. Many doctors don't do the testing necessary to rule out other causes of dementia. It seems that Dr T does some extensive tests before treating people. Is he looking for patients with something other than alzheimer's to treat? I wonder if he ever tells a patient that this proceedure is not appropriate for them or if it is just a "show me the money" criteria. At least a few of these people are likely to have some other cause for their dementia. All the more reason for proper tests to be done. It seems to treat something, but what?
Most of the argument seems to be about the money. The supporters of Enbrel don't seem to want answers they simply want insurance or medicare to cover the cost. Since this would be a patented proceedure, will it remain in the hands of a few doctors who may or may not accept what insurance or medicare will pay. A fast track by the FDA will not quarentee that this would become available to all at a reasonable price.
There is a reason why the makers of enbrel do not pursue this. I don't know what it is, but since they don't pursue it, clearly they have a reason. The FDA has stated that a request must be submitted by the company or patent holder, or trial conductors in order for them to consider this. It is not based on a popular vote. Ca-ching, break th
I agree with moms_buddy; desperation for treatment should never outweigh common sense issues. I'd give most anything to have Mom back as herself, but I won't risk her health unnecessarily. If enbrel truly is helpful, then let's see some concrete research on effectiveness and safety. Thank you for having a level head amongst all the hype.
Angela, your article was a breath of fresh air. Desperation for treatment should NEVER outweigh common sense issues nor replace the need for legitimate scientific research and testing. "Blinders" of ANY kind have no place in searching for solutions to our problems.
For those who have money to burn and wish to participate in the current Enbrel treatments offered by a dermatologist and his franchisees, I wish you well. But for the majority of sufferers, money IS a BIG issue and should be reserved for patient care and not to enrich any doctor who is doing an end-run around the legitimate scientific medical community.
It is horrifying to me how incredibly profit oriented our system is in the research, development and implementation of drugs and therapies. Our government does NOT protect us in this area; the "market" is driven by greed and profit. When did medical care become a "market" and patients considered "consumers"? There are some things in life that should NOT be driven by profit, but for the altruistic desire to make things better for people everywhere.
I fervently WISH that SOME legitimate researchers would TEST Enbrel and this particular treatment if for no other reason than to prove or disprove its efficacy and long-term benefits for treatment of AD. It is a SHAME on the entire medical research community for no one to step up and do so. They are shirking their responsibility to their profession. A special place in hell is hop
I recently heard that some arthritis sufferers who used Enbrel long-term developed lymphoma. Haven't been able to confirm this, but our doctor thinks it is too risky because of the reasons stated by Angela. I, too, would like to see good, sound research done.
To finish my sentence in the last post:
Many other issues were wrong or half truths.
YOU CAN'T ALWAYS TRUST THE MEDIA!
CAN'T TRUST THE MEDIA
In response to Peter, there was an article just written in the UK named
False Claims of Doctor Who 'Can Reverse' Alzheimer's Disease dailymail.co.uk-I just went to the site & saw they changed the title & added one paragraph about patients: Doubts over claims of doctor who 'can reverse' Alzheimer's. Many of us wrote comments but still says "no comments posted". This is PART of a comment from another blog from someone who was actually there that day:
http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/4971061982?r=7631006992#7631006992
"When I read the contents of this daily article, I actually wanted to throw up. I was there that day and was interviewed alone and then with my mother. I told them how the shots had given me my mother back. I also told them that her physician was talking about getting outside help ready because she was going down quickly. We don't talk about that now because she has improved to such a point, we don't need any help. She is going out and socializing again, remembering names she was having trouble remembering. She had lost all of her joy. My mother is fun again. Now she has HOPE...
They betrayed us. They told us they were doing an article on how the shots were helping people & wanted to talk to patients who had had results."
This was from a reputable paper, & the info about the Doctor was outright lies.
UCLA just named him an employee in an article in Jan. 08, & many other iss
Believe it or not, the spice TUMERIC does not cure Alzheimers, but definitely prevents it - which has been proven by doctors. Your comments would be much appreciated it you can shed more light on this. Thanks
Dr. Tobinick is training doctors across the country but they are not allowed to advertise because this is an off-label use of the drug Etanercept (Enbrel). If you ask your doctor, and they don't know enough about it, you can see the study on the Tobinick INR website, and print it out for your doctor to look at. The website also has links to publications that you can also bring to your doctor to show it's a peer-reviewed published study. No clinical trial was done yet, but that will take years, so many of us are choosing the off-label treatment...not covered by insurance. You need to weigh the benefits against the risks of AD. The drug is FDA approved for Rheumatoid Arhtritis. From all the patients caregiver's I've seen or talked to, there have been no adverse side effects for their Loved Ones, so far so good! I want more people to know about this, the more that know and get treated, the more the hope will be given to the public, and the sooner Medicare or Insurance will agree to pay for it...I hope!
I feel immediate research into the use of off label Enbrel as a tool in fighting Alzheimers is so needed.
The mayo clinic is so highly thought of and a place where people turn for answers and for Hope.
If there is a doctor that will do this for my mother, I will go for it. What does she have to lose? It would be impossible to travel across country, but I'll search on the east coast.
It's my understanding that Dr. Tobinick has patented the method by which Ebrel is injected, and that means only he or doctors he approves can administer this drug. I hope there is a way around that. But at the same time, everyone should consider the side effects that you can read at enbreldotcom. It does weaken the immune system. Patients using enbrel have a higher rate of lymphoma. The onset of MS, seizures, TB, and other possible infections have been noted also. My Mom is late stage and we would be glad to try anything that would help. But this needs further study
While we all agree that the use of Enbrel in AD was not put to the rigors of a clinical trial...then let us do it now! We are spending too much time stating and restating this fact. Move on and put it to the test. The validation or acceptance that Enbrel is doing something has been documented. To prevent vulnerable caregivers from spending their life savings chasing an expensive patented procedure ...please put it to the test so it will be available to all at a reasonable fee.
As a respected, academic institution, a Mayo conducted trial would be the answer to validate or refute the use of Anbrel in AD. As Bob stated below, if the results are that dramatic, the trial does not need to be costly and long in duration.
Ms Lunde -one more thing and with only respect, why don't you take a walk away from your desk and go to the Tobrinick center and actually see what is going on. Couldn't hurt and could provide you with a little more detail for your article. No?
I forgot to mention that any doctor can prescribe Enbrel and administer the shot.
That means this treatmen IS CURRENTLY AVAILABLE. It is also perfectly legal for a doctor to prescribe this medicine.
My mother is 90 and we have been living with a formerly double dose of this before my father died and now mid - late stage for 8 years. I would love for her to know me and her grandchildren before she died. The younger ones will have such unfair memories. I would also like to see her smile again. If Enbrel was available locally, I would be on the front doorstep of the doctor providing it.
There's not going to be a clinical trial until Amgen agrees to it.
Let's be clear. My Mother has Alzheimer's and the only FDA approved treatments out there only help return up to 5% functionality of Alzheimer's patients for a limited amount of time. There are drugs being developed right now that may effect a positive change in the underlying causes of alzheimer's which the current treatments do not. THEY ARE YEARS AWAY.
Now we come across a new off label treatment using Enbrel. It is injected into the neck and is showing drastic and sustained improvements with few or no side effects shown in patients. Quality of life is improved, functionality is improved and communications skills are improved. There is one lady in particular being treated who was completely mute and now can speak and interact with her husband better.
It seems that people like you should simply check out this story and write balanced articles about it. The stories regarding the patients being treated with Enbrel are all over Youtube and the Alzheimer's forums. Please take a look and see for yourself.
Unfortunately, there are also journalists out there who are not covering the story in a balanced way and are helping to block this treatment from going mainstream. This is so important for so many people that it is negligent for the right people to not investigate this with an open mind.
YOU CAN NO LONGER SAY THAT THERE IS NO TREATMENT FOR ALZHEIMER'S BECAUSE THERE IS PROOF OUT THERE THAT THERE IS!
I believe that any large hospital, including Mayo, could find the limited resources needed to conduct their own mini-trial on the use of Enbrel injections for treating AD. How much would it cost to conduct a four month trial on 30 patients? How about 10 of these recieving the Enbrel perispinally in the neck between 6 and 7, 10 receiving the same but at a different location, like the lower back, and 10 being injected at either location with a placebo. If the results are seen so quickly, and I believe they really are based on the chat room reports from a dozen people, four months would be plenty of time to prove the treatment and then get the mainstream media and mainstream medical community to insist on a fast track approval.
In response to Jeanne's question, AIDS often affects younger adults and children Alzheimer's affects mostly the elderly, whom our society views as expendable, evidenced by the way we place them in nursing homes and give up on them rather than fight for a cure. Hey folks, WE are next in line for this horrible disease. Amgen, AA, and FDA stop dragging your feet on this or there still won't be any help for us when we or our peers get it.
I have been following the Enbrel treatment since the following article appeared in the JNI newsletter. http://www.jneuroinflammation.com/content/5/1/2
When my time arrives, I will seek out this treatment with or without the blessing of the FDA, AMA, ADEAR or any org that simply doesn't care enough about AD to fast track the only real hope that is currently offered. Because AD is just as fatal as AIDS, please tell me why the delay in starting these studies? Give me a reason that makes sense. What did the AIDS advocates do that we are not able to accomplish? The reason, I believe, is that AIDS was thrust upon us suddenly...There was an outcry for help. AD has been with us for such a long time the outcry is simply a whisper and cannot be heard, even though it's just as loud. Please help spread the word.
Let’s see what we have here …
• A disease that has but one conclusion – the miserable death of the victim.
• A therapy with STRONG anecdotal evidence (including videos) of reversal of symptoms.
With enormous public pressure, the government was able to fast-track a cure for AIDS, and developed a cocktail of drugs for the once-fatal disease. Until then, AIDS had been killing our young and many high-profile victims.
Alzheimer’s, to a large extent, kills our older population – our moms and dads and spouses. I suspect that we’ll also need a ‘cocktail’ of drugs to cure Alzheimer’s. Alzheimer’s victims are just as worthy of a fast-track concentrated drive for a cure. Until then, we have one ingredient of the ‘cocktail’ which, for the first time, actually produces a reversal of symptoms.
Even if those with Alzheimer's did have the time to wait for Clinical Trials, it appears that for a Clinical Trial to take place Amgen must file a request for one with the FDA. Amgen seems to have come to the erroneous conclusion that the individuals being helped by off-off label Enbrel treatments for Alzheimer's and their loved ones are frauds and crazies.
It appears that launching a study in a highly respected facility (perhaps the Mayo Clinic) that could quickly either prove or disprove the value of off-label Enbrel treatments as a tool in fighting Alzheimer’s is the very least that Amgen should have done by now. Please don’t give me the standard health risk warning routine. My loved one (and countless others) would rather die seeking an advance in the treatment of Alzheimer’s than go out whimpering.
I feel that every Amgen stockholder should be questioning why Amgen has followed “a do nothing policy” on an issue that impacts many.
Maybe Enbrel may be of help I'm not sure I'm concerned about the information how it has been presented and some of the parties involved.
Breakthrough or False Hope? Etanercept Case Report Draws Scrutiny
http://www.alzforum.org/new/detail.asp?id=1738
I'm happy if it gives some hope and comfort but I'm also weary of it.
With my mother I saw a rapid decline and it was like looking into a bottomless pit.I had reached a point where I could not take adequate care of her myself.
I found a nursing home with an alzheimers unit and they saw things I could not see.
She was able to go to mass everyday. She could stay up all day and or night without me worrying. the rooms had peoples names and picture boxes of their lives outside the doors.The staff provided activities every day and night and outings.Songs, dancing they lived life as much as they could.
The changes were dramatic and medications were not the major factor, she was on an antidepressant.
She had been the most active and happy I had seen in years. I could also she the deterioration but it seemed slower and manageable.
"Activities, activities, activities" has been stated to me on more than one occassion.
We are not all capable of 36 hour days even when we have them.
They also had a continnuum unit for when the disease progressed. It made it easier.
"Understanding Difficult Behaviors" Anne Robinson et al and "Getting Through:.."Elizabeth Ostuni et al were two books I found helpful
My father is also one of the few who have been able to get the Enbrel injections for Alzheimer's. He has improved significantly from where he was when we started in his ability to communicate/ interact with people, his short term memory, and his mood. Before treatment he was depressed and withdrawn. Now he is upbeat and interacts freely with others. He is not cured or even back to his old self, but we have some of him back. Before treatment he was in a fast downhill slide, getting noticeably worse with each passing week but the progress of the disease seems to have stopped as well.
Please, please, please....can we have studies to find out who this will work for, how well and for how long? People are literally dying for lack of the information! It has worked for us and several others I know. There needs to be scientific, double-blind studies to find out the truth about this. In the meantime, can it not be made available (with informed consent) to the desperate thousands of AD sufferers who have no other options and very little time left?
Sorry, I forgot a couple of details. Media tends to exaggerate a bit. Mom is not perfect, she is better. Every week she seems to get a little bit more of herself back. At about 3 months, the improvement levels off and just maintains, truly maintains unlike the AD drugs available now. Several patients have been on the treatment for over 3 years now, and they are still maintaining. We are at 9 weeks and hoping for more. But, if not, at least she is living a better life, and will NOT become a vegetable.
To all of you, just so you know, this is a real treatment that has helped my Mom become more alive and happy. I had told my friends and family in Feb 2008 that Mom was going downhill so fast, that she would probably be an invalid within a couple of months. Well, here it is a couple of months later, and we were out shopping today for a nice small Lazboy recliner...NOT a wheelchair! She walked around the store with me and practiced her "long steps" and was doing better than I've seen in a year. I had her try out 3 or 4 different chairs where she had to get up and down quite a bit. Well, we got home, and she took a nap...tuckered her out a bit...but, Wow. The treatment is 90% effective...astounding. It is expensive and not covered by insurance...upsetting. It is working...Amazing. It is NOT A CURE, it is a treatment that needs to be continued for the rest of her life until a better treatment or cure comes along. This is alzheimer's, I don't have time to wait for a double-blind clinical trial. When was the last time you saw an Alzheimer's patient be able to use their mind well enough to cause a placebo effect...really. I told my Mom she would get better with all those other AD drugs too, but she didn't get better, she got worse. There must be a loop-hole somewhere where we can get this approved now...FDA Fast Track? We're working on it, but have just been given the run around so far. Any ideas are welcome. Please see our youtube videos/search Enbrel for Alzheimer's.
Sorry but following announcements isn't much use with the AA. Involvement and advocacy is. I have been both a caregiver, advocate and member of the Association for many years.
http://www.alz.org/index.asp
I have supported and been involved with programs involving respite, education, the memory walks , safe return and political advocacy.
In 2007 over $20 million dollars went to research.
From what is been posted I have ahard time believing anyone has really looked at what the Alzheimer's asociation does. Sadly I know there are no miracle cures and have miracle cures and dealt with the issue for over 20 years.
When Dealing with Alzheimer's the process is like Kubler Ross's stages of grief: from Death and Dying:
Denial (this isn't happening to me!)
Anger (why is this happening to me?)
Bargaining (I promise I'll be a better person if...)
Depression (I don't care anymore)
Acceptance (I'm ready for whatever comes)
(Dr. Elizabeth Kubler Ross)
Failure free activities, memory books , cueing and supporting families by giving them time off can help.
The brain and body are shutting down and it is important to separate the person from the disease. Long term memory is the last to go so activities that enagae it can be helpful.
It is painful but there is alot that can be learned. I always found it swomewhat ironic that I became closer to my own mother when she had Alzheimers disease.
Much was based on the care, activities and realities learning about the disease.
I've followed the announcements issued by the Alzheimers Association over 10 yrs, as a result of watching my late father-in-law suffer and die from Alzheimers-related complications, and my wife has a significantly increased risk as a result of both parents having Alzheimers. During that time, the AA has provided less information than can be obtained from most reputable medical web sites, and Dr Thiess (their PR director) has always been very careful to avoid raising hopes that some of the occasional positive reports from studies of experimental drugs being effective. A certain degree of caution on new products is a good thing, but I haven't seen or heard of anyone being helped by anything AA does, other than providing jobs for their staff. There are other Alzheimers research organizations that utilize a much higher percentage of their funds on seeking a cure. I believe AA funds some research, but it appears that it is much more PR oriented.
Simone, I totally agree. Why can't our loved ones be allowed to, at least, just try it?! It is like holding a carrot out of reach...just to taunt.
Suez
You know, I don't care if the FDA approves this drug for treatment of Alzheimer's, my mother doesn't have time for lengthy trials and double blind studies. She is quickly running out of time and if this could give her back to me even for a little while, I would have it done. We get so little from the current treatments and you want us to be good little children waiting for our betters to do the testing? Thanks for nothing.
I have been trying to find a why to get this treatment for her but have met nothing but road blocks from all sides including the Alzheimer's Association. Again, I don't care about proving this drug, just give it to her. Her quality of life could not get worse, I assure you. We've been waiting for 12 years for a cure, why do we have to wait one more day!
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