I am 53 years old. Last year my father died at the age of 82 with Alzheimer's. His mother died in her 70's with the disease. I was having short term memory loss and worried about me developing the disease. We have a wonderful group of doctors and researchers here in Birmingham, AL. There is a geriatric group that has a large majority of patients with Alzheimers. They treated my father until his death. I saw the geriatrician and the researcher also. All of my testing, labs and MRI's were normal at this time except for one. It is a fairly new blood test. Alzheimer's is a genetic disease. The test will show if you have a genetic marker for the disease. Some will not want to know if they have it, but I chose to. I was placed on large amounts of certan vitamins such as Vit D 10,000 IU one time weekly and folic acid 7.5mg daily. I also take a multivitamin daily.
I urge anyone who is suspicious that they or loved ones might have beginning Alzheimer's to see a physician with the knowledge of this disease. We have a couple of wonderful, kind and understanding physicians here. Please don't hesitate!
I would like to start a group online to discuss and share each of our experiences as we live with the knowledge that we have the diagnosis of this disease.
May God see us through this illness.
Love, Melanie

Well I already at 47 feel I have no chance of escaping it, unless I am run over by a speeding train. My Mother's sister died with it, now my precious Mother is in the moderate stages of it. Hit her around the age of 75 (silly me at her age I thought we'd escaped it) Daddy is 81 and mind is sharpe then mine. When this disease stole my Aunt Mary from me, I figured it was probably genetic, but I never researched it. I'm so down and depessed at this point I don't want to know either for fear I'd go walk out in front of that train. Thank you for the info though.

Please do not do this too yourself I have seen many continue to live fully with this disease with the right support, please contact people in your area that are knowledgeable and meet in a group talk this out with them I know and trained therepist and they live fully and giving youself such hardship. Please get support locally.
God Bless Do it today
Wendy

my dad is in his last stage we just had to put him in a nursing home and this is something we did want to do but one day it just hit him he couldnt walk and other things I quess when they tell you that you will know when the time comes to place them some where that is very true.his mom and sister both had it .so I am praying me or my brothers dont.and our kids..

Hi All,

I just found this thread and feel the need to chime in here, to give you a glimmer of hope. Have any of you read the thread on Enbrel for Alzheimer's? It is really long now, but we've only been posting since January when an article came out in a Medical Journal.

I am taking my Mom in for the treatment, and she is truly improving. Some of the news headlines are misleading, because their titles are something like: Miracle Drug Reverses Alzheimer's Symptoms in minutes! Well, the truth of the matter is that is DOES reverse a few symptoms within minutes, but the treatment actually improves with time. My Mom was able to line up some coins, and draw a square twenty minutes after the injection, she couldn't do it at all before the treatment. Now I was amazed, but that's not what the news stories make it sound like. They make it sound like you're going to go home with a completely cured person. That's not going to happen. What did happen is that Mom has improved back to the point where she was about a year ago. Joining in conversations, singing, and able to help around the house. She is happier, and has a better feeling of self worth again. She is still very confused at times, and she still freezes up occasionally when walking to the bathroom, but these lapses are occasional, not frequent, and we can deal with that.

A few of us have put up before and after videos of our Loved Ones on youtube. If anything, these will give you hope for yourselves and your children...and possibly for your Loved Ones now.

It is very expensive and not widely available yet. I am working hard at spreading the news so that more people get treated, the data rolls in, and Medicare and Insurance will have to cave in and pay for it. The treatments have to be continued weekly for the rest of their lives as far as we can tell. This is fairly new, but we do know that several patients have been receiving the treatments for over 3 years, and they are still doing fine and maintaining. One man is 90 now!

The following are links to the youtube videos and Dr. Tobinick's office. Bob adds more videos about Linda all the time, so there may be more now. My statement below sounds like an informercial, but it's not. I am a caregiver, we are receiving the treatments, we don't get a discount and I am not paid by anybody...I just want to spread the word so the FDA will take a look at this.

Thanks, Felicia McColl
famc17@yahoo.com

The youtube videos to watch are:
My Mom Before and After: http://youtube.com/watch?v=OhTtJkN3o2Y
Me with an Explanation: http://www.youtube.com/watch?v=rAZhX7LEZeU
Hi All,

I just found this thread and feel the need to chime in here, to give you a glimmer of hope. Have any of you read the thread on Enbrel for Alzheimer's? It is really long now, but we've only been posting since January when an article came out in a Medical Journal.

I am taking my Mom in for the treatment, and she is truly improving. Some of the news headlines are misleading, because their titles are something like: Miracle Drug Reverses Alzheimer's Symptoms in minutes! Well, the truth of the matter is that is DOES reverse a few symptoms within minutes, but the treatment actually improves with time. My Mom was able to line up some coins, and draw a square twenty minutes after the injection, she couldn't do it at all before the treatment. Now I was amazed, but that's not what the news stories make it sound like. They make it sound like you're going to go home with a completely cured person. That's not going to happen. What did happen is that Mom has improved back to the point where she was about a year ago. Joining in conversations, singing, and able to help around the house. She is happier, and has a better feeling of self worth again. She is still very confused at times, and she still freezes up occasionally when walking to the bathroom, but these lapses are occasional, not frequent, and we can deal with that.

A few of us have put up before and after videos of our Loved Ones on youtube. If anything, these will give you hope for yourselves and your children...and possibly for your Loved Ones now.

It is very expensive and not widely available yet. I am working hard at spreading the news so that more people get treated, the data rolls in, and Medicare and Insurance will have to cave in and pay for it. The treatments have to be continued for the weekly for the rest of their lives as far as we can tell. This is fairly new, but we do know that several patients have been receiving the treatments for over 3 years, and they are still doing fine and maintaining. One man is 90 now!

The following are links to the youtube videos and Dr. Tobinick's office. Bob adds more videos about Linda all the time, so their may be more now. My statement below sounds like an informercial, but it's not. I am a caregiver, we are receiving the treatments, we don't get a discount and I am not paid by anybody...I just want to spread the word so the FDA will take a look at this.

Thanks, Felicia McColl
famc17@yahoo.com

The youtube videos to watch are:
My Mom Before and After: http://youtube.com/watch?v=OhTtJkN3o2Y
Me with an Explanation: http://www.youtube.com/watch?v=rAZhX7LEZeU
Update on my Mom:
http://www.youtube.com/watch?v=9ANqK7oJuac
Bob Lees wife before Enbrel: http://www.youtube.com/watch?v=zhKO80l_IJQ&feature=related
Leo Before and After: http://www.youtube.com/watch?v=O42rp1qwqwo&feature=related
Linda After, she was completely mute!!!!: http://www.youtube.com/watch?v=HAPduf9uY-k
More Linda After!!!!!: http://www.youtube.com/watch?v=JonA0bPYa2U

Dr. Tobinick's Website: http://www.nrimed.com/
The INR (Dr. Tobinick's office) is in the process of training doctors across the country. If you e-mail the clinic with your name (caregiver, not patient for privacy issues), address & phone number, they will e-mail you information on the closest doctor available to you.
E-mail: nrimed@gmail.com

April 16, 2008
Amgen Statement on Alzheimer's Case Study

Amgen Statement on Alzheimer's Case Study
A number of news reports recently have been published regarding an experimental treatment for Alzheimer's disease by using Enbrel® (etanercept), a potent anti-inflammatory agent. This off-label, unapproved treatment, administered by Dr. Edward Tobinick, is not supported nor endorsed by Amgen.

Amgen's mission is to serve patients by aggressively pursuing research to help fight grievous illnesses. We fully recognize that Alzheimer's disease is a relentless neurological disease for which there is currently no cure. Our hearts truly go out to brave patients and families who are dealing with this disease. Amgen will continue to review data on the use of ENBREL and other anti-inflammatory agents for the treatment of Alzheimer’s disease.

While Amgen and others have long recognized the potential role of inflammation in neurological conditions, we have carefully examined these reports and believe that there is insufficient and unsubstantiated scientific data to support the use of ENBREL as a means of treating Alzheimer's disease. For example:

We are not aware of any data to suggest that ENBREL reaches either the cerebrospinal fluid or the central nervous system in sufficient concentrations to inhibit the action of TNF when administered by Dr. Tobinick's method.
In addition, we find the rapidity of response reported by Dr. Tobinick to be implausible when considering the time required for resolution of an active inflammatory response and the potential impact that this could have on cognition.
Furthermore, we are not aware of any placebo-controlled data for Dr. Tobinick’s method. Thus, it is not possible to determine whether the clinical benefit that Dr. Tobinick reports is due to treatment with ENBREL.
Dr. Tobinick's case studies have not been presented at an appropriate medical or scientific meeting, nor have they been published in a rigorous peer-reviewed medical journal. Anecdotes are not sufficient scientific evidence to support treatment of Alzheimer's disease with ENBREL, and Amgen does not support this or any off-label use of ENBREL.

Additional Information:
The Alzheimer's Association has additional information regarding Alzheimer's research and patient/family support groups, as well as a statement regarding these reports.

For more information about the approved indications for ENBREL, including important safety information, please visit www.enbrel.com.

One Amgen Center Drive P.O. Box 8299
Thousand Oaks, CA 91320-1799 Philadelphia, PA 19101-8299
IMPORTANT DRUG WARNING
SUBJECT: Tuberculosis and Infections with Enbrel® (etanercept)
March 14, 2008
Dear Health Care Professional:
Amgen Inc. and Wyeth Pharmaceuticals have added a BOXED WARNING to the ENBREL US Prescribing Information (US PI) to further strengthen and clarify information regarding the risk of infections, including tuberculosis (TB) in patients taking ENBREL; namely the new recommendation to screen for latent tuberculosis infection before beginning Enbrel. The complete BOXED WARNING is as follows:
WARNING
RISK OF INFECTIONS
Infections, including serious infections leading to hospitalization or death, have been observed in patients treated with ENBREL® (see WARNINGS and ADVERSE REACTIONS). Infections have included bacterial sepsis and tuberculosis. Patients should be educated about the symptoms of infection and closely monitored for signs and symptoms of infection during and after treatment with ENBREL®. Patients who develop an infection should be evaluated for appropriate antimicrobial treatment and, in patients who develop a serious infection, ENBREL® should be discontinued.
Tuberculosis (frequently disseminated or extrapulmonary at clinical presentation) has been observed in patients receiving TNF-blocking agents, including ENBREL®. Tuberculosis may be due to reactivation of latent tuberculosis infection or to new infection. Data from clinical trials and preclinical studies suggest that the risk of reactivation of latent tuberculosis infection is lower with ENBREL® than with TNF-blocking monoclonal antibodies. Nonetheless, postmarketing cases of tuberculosis reactivation have been reported for TNF blockers, including ENBREL®. Patients should be evaluated for tuberculosis risk factors and be tested for latent tuberculosis infection prior to initiating ENBREL® and during treatment. Treatment of latent tuberculosis infection should be initiated prior to therapy with ENBREL®. Treatment of latent tuberculosis in patients with a reactive tuberculin test reduces the risk of tuberculosis reactivation in patients receiving TNF blockers. Some patients who tested negative for latent tuberculosis prior to receiving ENBREL® have developed active tuberculosis. Physicians should monitor patients receiving ENBREL® for signs and symptoms of active tuberculosis, including patients who tested negative for latent tuberculosis infection.
The ADVERSE REACTIONS: Infections section of the US PI has also been updated to include the following information: “In global clinical studies of 20,070 patients (28,308 patient-years of therapy), tuberculosis was observed in approximately 0.01% of patients. In 15,438 patients (23,524 patient-years of therapy) from clinical studies in the US and Canada, tuberculosis was observed in approximately 0.007% of patients. These studies include reports of pulmonary and extra-pulmonary tuberculosis (see WARNINGS).”
The ENBREL Patient Package Insert (PPI) is being converted to a Medication Guide. The Medication Guide is designed to provide important patient safety information and increase the awareness about the proper use of ENBREL. The Medication Guide will be distributed when a prescription for ENBREL is dispensed in the US.
A copy of the revised US PI is enclosed. Following approval by the FDA the Medication Guide will be available on Enbrel.com. We encourage you to review the full prescribing information and discuss the safety information with your patients.
To report adverse patient experiences or request further safety information on ENBREL, please contact Amgen’s Medical Information Connection™ at 1-800-77-AMGEN. Alternatively, adverse events may be reported to FDA’s MedWatch reporting system:
•
by phone (1-800-FDA-1088), by facsimile (1-800-FDA-0178),
•
online (https://www.accessdata.fda.gov/scripts/medwatch/) or
•
mailed, using the MedWatch for FDA 3500 postage paid form, to the FDA Medical Products Reporting Program, 5600 Fishers Lane, Rockville, MD 20852-9787
Sincerely,
Sean E. Harper, MD Bruce Freundlich, M.D.
Senior Vice President, Global Development Multi-Therapeutic Area Head
and Chief Medical Officer Inflammation/Musculo-
Amgen, Inc. Skeletal Diseases
Global Medical Affairs
Wyeth