• March 18, 2008 at 7:49 am

    The absence of any posting concerning Dr. Tobinick’s use of Enbrel for treatment of Alzheimer’s is something that has puzzled me from the first day that I joined this site. So much so that…I contacted the Administration before starting this thread…and…Received a timely reply that indicated that anything that had anything to do with Alzheimer’s was a valid topic. So…Here goes. I’ll apologize up front for the length of this post…For my ignorance of scientific matters…and will attempt to keep this as objective as possible.

    For those who do not know anything about either Dr. Tobinick or his Enbrel treatment, I will attempt to sum it up in purely non-technical (and I hope accurate) terms and post some links as I go along.

    I learned about Dr. Tobinick while reading a post on the Alz.org forum that contained the following link to a 01/09/08 article that appeared in Science Daily that stated that an individual with Alzheimer’s had been administered an injection in the neck area of the spine and showed immediate cognizant improvement. (At a future date I learned that the injections were administered weekly.) I got excited and decided to follow the thread for future postings.

    http://www.sciencedaily.com/releases/2008/01/080109091102.htm

    Didn’t have to wait long. The next day another link was posted to a Bloomburg.com site that contained basically the same information…but…Mentioned that “In 2006, the same researchers reported that 15 Alzheimer’s patents with mild to severe symptoms showed “sustained cognitive improvement” after six months of weekly Enbrel injections” that had been reported in the Journal of Neuroinflammation. When I read 2006, I had trouble believing that more had not been done.

    http://www.bloomberg.com/apps/news?pid=20601202&sid=a0j.t_nzzQcQ&refer=healthcare#

    Clicked on a link in the Bloomberg article and pulled up a pdf file that contained what I assume to be an actual scientific paper. Not having any scientific training hampered my comprehension…but…I waded through it until my patience was rewarded on Page 10. It contained some before and after treatment tests that were totally amazing. I continued plodding until I came to a quick time video link of a description by 2 relatives of the people that were treated…It brought my system to a halt. I began to get extremely frustrated that the study of this procedure does not appear to have gotten off of the ground, and vowed to continue following the thread.

    http://www.jneuroinflammation.com/content/pdf/1742-2094-5-2.pdf

    The following day a posting on that forum said: “…called the Institute for Neurological Research, 310-824-6199. This is a private practice for Dr. Tobinick. There are no clinical trials available, but you can receive treatment if accepted after a $300 first appointment and then a $650 Medical evaluation appointment. If accepted, the weekly treatments cost $600 plus the drug which cost approximately $220 per week. I do not think any insurance company will pay for treatments since it is considered experimental. So, why aren’t there any trials if this is such a wonder drug for alz.??????”

    A lot of chit-chat went on until 01/23 …A link Alzforum was posted. In it I read that Sue T. Griffin, Phd., Editor-in-Chief, Journal of Neuroinflammation did an article after watching the procedure, and was amazed at the results. I also learned that “…Edward Tobinick is a board-certified dermatologist and internist, who has been active laser hair removal prior to developing an interest in the use of etanercept….and the Medical Board of California lists Tobinick as being on probation…. Tobinick was charged with unprofessional conduct relating to advertising an unproven treatment for back pain….”

    For the life of me I can not figure out how a dermatologist/internist could make a Alzheimer discovery and was not thrilled at the news over this possible probation…but…The article by Sue Griffin was encouraging. Decided to keep following the thread and was still frustrated over the lack of follow through testing of the procedure..

    http://www.alzforum.org/new/detail.asp?id=1738

    http://www.jneuroinflammation.com/articles/top/browse.asp
    (link to 3 articles that ran in the publication)

    2 members of the forum posted that they made appointments with Dr. Tobinick and were going ahead.

    Others that are receiving treatment have joined and posted.

    All have reported improvement (basically not dramatic) and one said that they were told that “he had improved 5 points on the MOCA test…”

    One stated that they were able to purchase Enbrel from their pharmacy and bring it in for use. The patient’s insurance company paid for the medication.

    Dr. Tobinick apparently is training other doctors in the procedure (for a fee) and holds patents on the procedure. Personally…I don’t begrudge his profits. He would be making even more if he was working for a drug company and research was funded from jump.

    Amgen is not doing anything. Many are hold the opinion that one of the reasons for their inactivity in the area of Clinical Research is because their patent on Enbrel will expire before they can reap any benefits if the results of the studies turn out to be positive. I’m not happy with this decision and cannot help but hold the opinion that they may a bit embarrassed that they may have to report to shareholders that they missed out on a ‘cash cow’.

    The following are links to forums with active threads on Enbrel. (A search on the word “Enbrel” will point you to the proper threads). My goal in posting them is not to take members from this forum…It has the potential of being an excellent one. In the time since Charlie was diagnosed I visited the Fisher Center site often and have posted about their chat rooms on the alzheimers.infopop forum

    http://www.alzheimersweekly.com/forums/index.php

    http://alzheimers.infopop.cc/eve/forums

    Tonight as I was gathering links I came across a link to the videos of the statements of relatives that did not crash my computer. They are worth watching. The link is:

    http://www.nrimed.com/AD.videos.html

    The only negatives that I encountered while examining Enbrel were that an individual being treated by Enbrel may eventually develop immunity to the drug…and…That there are health risks associated with the drug.

    Charlie’s Alzheimers has not advanced to the point where I would consider Enbrel treatment. If it had… I could not afford to travel to California and probably could not even afford the treatment.

    In my opinion…If something does not get our loved ones first, Alzheimer’s will. They deserve the right to be given the choice. This seems to be the best horse in the race. Too much time has been wasted. Advertise for volunteers…Get consent forms signed…Hang the ‘blind-double blind’ stuff and get the research show on the road. Work around the placebo effect by administering the standard tests. If they are good enough to indicate probable Alzheimer’s or dementia…They should be able to indicate an improvement.

    I’ve reached the point where my frustration has turned into anger. I’m e-mailing and writing everyone that I can think of and asking for research and would appreciate anyone else doing the same.

  • March 18, 2008 at 6:49 pm

    Hi Cheri:
    I’ve also been following along on another couple of forums about the enbrel. Certainly at this point its out of most people’s reach, because of the high cost and location…….and even if some company takes it on and does the research and testing, you know it’s going to be years down the road before it ever reaches those who need it.

    I guess we can only hope there’s something in the works that will be available sooner. In the meantime, me and a bunch of others here are doing our own research experiment with the cinnamon tablets!

  • March 19, 2008 at 2:25 am

    Mary—For the people in the United States cost and location may not be as great a factor as it would be for someone living in Canada.

    Dr. Tobinick is training other doctors in the procedure. After training they will return to their practices and offer the treatment. (I suspect that the cost will be lower.) As I mentioned before…Some insurance companies are picking up the tab for Enbrel medication…but not the actual treatment. (The product does have other valid uses. If the insurance company does not ask why it is being used…I suggest that no one tell).

    I recently heard (from a source outside of the forums & Dr. T’s office) that many people that have received treatment have shown marked improvement in the Activities of Daily Living. I don’t know about others…but…If feel that it is the inability to perform these activities that often forces our loved ones into nursing homes. The cost of 1 year in a nursing home is definitely more expensive than 1 year of Dr. Tobinick’s treatment.

    The thing that has me most frustrated is that the Alzheimer Association appears not to have even sent anyone to check out the treatment. To me it is as if they want to shoot the messenger before listening to the message.

    I would appreciate others would urge the Alzheimer to at least go for a look-see by contacting”

    Jeffrey S. Carpenter;
    Associate Director – Early Stage Services
    Alzheimer’s Association National Offices
    225 N. Michigan Ave., Fl. 17
    Chicago, IL 60601

    jeffrey.carpenter@alz.org

  • March 23, 2008 at 5:41 am

    This is likely to be old news to some, and some may not care…but…

    Dr. Tobinick’s Enbril therapy for AD is going to be discussed in an open and professional context during an 04/16 conference in Little Rock, Arkansas. Hopefully this will get the ball rolling.

    Below is a link to the site and a list of speakers.

    http://www.agec.org/programs/conferences/BP_Alzheimers/speakers.asp
    ______________________________________________
    Speakers
    COURSE CO DIRECTORS:
    Dennis H. Sullivan, MD
    Director, Geriatric Research Education and Clinical Center (GRECC)
    Central Arkansas Veterans Healthcare System
    Professor of Geriatrics, Vice-Chair for Clinical Research
    Donald W. Reynolds Department of Geriatrics
    University of Arkansas for Medical Sciences College of Medicine
    Little Rock, AR

    Ronni Chernoff, PhD, RD, FADA
    Associate Director for Education and Evaluation
    Geriatric Research Education and Clinical Center (GRECC)
    Central Arkansas Veterans Healthcare System
    Director, Arkansas Geriatric Education Center (AGEC)
    University of Arkansas for Medical Sciences College of Medicine
    Little Rock, AR

    Kay Guthrie
    Administrative Officer
    Geriatric Research Education and Clinical Center (GRECC)
    Central Arkansas Veterans Healthcare System
    Little Rock, AR

    PLANNING COMMITTEE
    Ronni Chernoff, PhD, RD, Central Arkansas Veterans Healthcare System; AGEC
    W. Sue T. Griffin, PhD, Central Arkansas Veterans Healthcare System, UAMS
    Kay Guthrie, AO, Central Arkansas Veterans Healthcare System
    Kathleen L. Maddox, RN, BSN, Central Arkansas Veterans Healthcare System
    Dennis H. Sullivan, MD, Central Arkansas Veterans Healthcare System, UAMS

    FACULTY
    Catherine S. Cole, PhD, APRN, BC
    Assistant Professor
    College of Nursing
    University of Arkansas for Medical Sciences
    Little Rock, AR

    Stephen DeArmond, MD, PhD
    Professor of Pathology (Neuropathology)
    Department of Pathology
    University of California San Francisco
    San Francisco, CA

    Samuel E. Gandy, MD, PhD
    Mt. Sinai Professor of Alzheimer’s Research
    Mt. Sinai School of Medicine
    Chair, National Medical and Scientific Advisory Council
    Alzheimer’s Association
    New York, NY

    W. Sue T. Griffin, PhD
    Associate Director for Research
    Geriatric Research, Education and Clinical Center (GRECC)
    Central Arkansas Veterans Healthcare System
    Professor and Vice Chairman
    Donald W. Reynolds Dept. of Geriatrics
    University of Arkansas for Medical Sciences
    Little Rock, AR

    James W. Simpkins, PhD
    Professor & Chair
    Department of Pharmacology & Neuroscience
    University of North Texas Health Science Center
    Fort Worth, TX

    Edward Tobinick, MD
    Assistant Clinical Professor of Medicine
    University of California at Los Angeles
    Director, Institute for Neurological Research
    Los Angeles, CA

    Linda Van Eldik, PhD
    Co-Director, Center for Drug Discovery and Chemical Biology
    Associate Director, Cognitive Neurology and Alzheimer’s Disease Center
    Professor, Dept. of Cell & Molecular Biology
    Northwestern University Feinberg School of Medicine
    Chicago, IL

  • March 27, 2008 at 3:02 am

    The following are portions of the Enbrel Treatment has helped Mom! thread that at:

    http://forums.about.com/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=ab-alzheimers&tid=318

    that contain a recent update on Felicia’s Mom as well as the encouraging news that Dr. Griffin at the University of Arkansas would like to conduct a study on Enbrel.

    http://forums.about.com/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=ab-alzheimers&tid=318

    They are reprinted with permission from Carrie Hill, Ph.D., About.com Guide to Alzheimer’s Disease.


    03/20/08 Felicia McColl
    “…Some days are better than others, but all the days are better than they were about 6 months ago. My Mom is doing much better…she is happier and more interactive. She still can’t do a lot of things, and she still can’t remember what city or even state she lives in, but she remembered her phone number!!! Now that was a shocker to me. She went to her Great Grandson’s 1st BD party last Sat, and the family all noticed the difference in her. She’s been doing more at home too, helping prepare the strawberries (Cutting them up and putting the bad pieces in one bowl and the good in the other), peeling potatoes, washing dishes (not perfectly, but that’s OK), understanding the shows on TV, asking questions and making comments, instead of only speaking when spoken too, and many other things that just make her a person again….Mom is coming back, I just know it!!!

    Many people are concerned about the side effects but when we weigh the risks against the outcome of Alzheimer’s, there’s really no question about it being worth it. The side effects of Alzheimer’s are a very sad existence, then Death. The other drugs prescribed for Alzheimer’s also have some terrible side effects, but they were able to get them approved because they had time to go through the correct avenues and double-blind studies. Our Loved Ones who are already at Moderate to Advanced stages of this disease don’t have time for the “right” avenues. We need this fast-tracked by the FDA, but it has to start with the Drug company Amgen who is the maker of Enbrel. They won’t do it though, because their patent runs out in 4 years and a double-blind study takes at least that long. By the time the study is over, the drug will be made by Generic companies and Amgen wouldn’t be able to make their money back that they spent on the studies. We are in one of those vicious circles.

    Please do what you can to help get the word out about this treatment. If enough people see it’s real, and we can document enough cases, the insurance companies may approve this Off-Label use of Enbrel. If they only realized that it really works, they would save money on the cost of hospice care and residential care…and more importantly, they would be saving lives.”



    03/25/07 From carriehill
    “…Although Dr. Griffin has indicated that she’d like to do a clinical trial, there’s no guarantee that it will happen — it depends on resources, institutional support, red tape, etc. But it’s wonderful that she is looking into it and like you said, has an open mind about the whole thing….”


    03/25/07 From carriehill
    “…Just FYI…I have communicated with Dr. Sue Griffin at the University of Arkansas, who wants to conduct a clinical trial of this treatment at her medical center. I have offered to provide coverage of the research on my website if she is able to find the resources and mobilization to conduct the study…”

  • April 3, 2008 at 9:45 am

    Thanks for posting all the information here. I had heard a little about this topic when it first was covered in the media but nothing since. It does sound so promising. I think the reason it will likely remain somewhat expensive is that the enbrel has to be injected at a certain point in the neck so that it gets to the brain. But maybe as more people are trained to do it, that could even be done at home. Anyway, it gives me hope and I pray there are large clinical trials with it soon.

    O.

  • April 3, 2008 at 6:53 pm

    Recently learned that one of the doctors trained by Dr. Tobinick is administering treatments in The Villages, Florida. His name is Dr. Kraucak. He is Board Certified in Family Practice, Anti-Aging and Holistic Medicine. he is also a fellow of the American Academy of Family Physicians.

    I hope that he is the first of many and that the cost of the procedure decreases. As more people get treated the treatment will get more attention and it will be harder for the research community to ignore.

    Having hope is wonderful…but…I would like to hear more about results. So far 2 of the people on the forum http://alzheimers.infopop.cc/eve/forums have posted video’s of their loved ones on U-Tube.

    Leo- Arminee’s loved one
    http://www.youtube.com/user/armoandleo11

    Felicia’s loved one
    http://www.youtube.com/user/famc17

  • April 5, 2008 at 6:14 pm

    After reading a post by Bob Lee’s Apr 4, 10:58 PM post on the Enbrel thread located at the http://alzheimers.infopop.cc/eve/forums site, I became aware of what may be the reason for the lack of funding for further research into Dr. Tobinick’s Enbrel treatment. It seems that the Dr. T has a patent that applies to the use of any and all other TNF binding biologics to improve cognitive function in a human and may also apply to different methods of delivery.

    The full text of the patent can be found at: http://www.patentstorm.us/patents/7214658-fulltext.html

    Since Dr. Tobinick’s patent appears to rule out the potential of further research, there is little hope that money for treatment will be available from insurance or public sectors. Only the rich will know if it works.

    For the present reading Dr. Tobinick’s patent put an end to my ‘crusading’. I’ve got more pressing things to use my resources on (enjoying the quality time that I have left with Charlie) than fattening someone’s bank account.. Until I see Bob Lee’s wife Linda (or someone with her degree of impairment) sing, the Enbrel bandwagon can continue without my help.

  • April 19, 2008 at 4:51 pm

    Orient—My views and stance on the Dr. T’s use of Enbrel as a tool in battling Alzheimer’s are still the same. I believe that Enbrel injections work…but…My days of spending my time and money crusading are over. When I look at the patent situation and time line (that I believe to be accurate) below I get the impression that Dr. T was more interested in patenting than publicizing and getting the word out:

    Dr. T published in 1999
    Dr. T was granted a patent in 05/07 (I believe…one of several)
    The news finally broke in 01/08

    I get the impression that under the current set up the cost will remain prohibitive enough to kill any chance of public funding (Medicare in the US) for his procedure. My opinion is that a doctor willing to spend $5,000 to obtain training in Dr. T’s procedure is bound to demand (and receive) territorial concessions. I don’t know if the information is true…but I believe that I read that Dr. T is also charging these doctors a yearly, per patient $3,000 fee for the use of his patent. My feeling is that if Salk charged that much polio would be still rampant in the US.

    As far as prompt clinician trials are concerned. I hope that you are right. It was my hope that an announcement would be made at the Best Practices conference that was held in Little Rock, Arkansas. There was none.

    For those who have not been following the 15 page thread on another forum, I’ll post a link to Bob Lee’s YouTube videos of the progress made by his wife Linda at the end of this posting. While Linda may not bee singing…She appears to be gradually relearning how to speak after receiving 2 Enbrel treatments by a neurologist outside of Dr. T’s network.

    http://www.youtube.com/user/tumates

    [/b]

  • April 19, 2008 at 9:23 pm

    It’s just sad that the almighty dollar reigns again! So many might be helped with this treatment….but …..we will never know!

  • April 29, 2008 at 6:37 pm

    I just had a 30 minute phone conference/interview appointment with Dr. Tobinick 4/28/08 from 4:30-5:00pm; It cost $700 up-front on a credit card. The evaluation is now $5000 plus $600 for Visit & $200 fro injection plus he wants us to stay in LA from KY for 6 weeks!!! Yikes. Does anyone know other Doctors closer to Western KY that are doing this procedure??? Thanks, my husband has had AD for over 6 years now.

  • April 29, 2008 at 8:09 pm

    Lois—I’m surprised to hear that Dr. Tobinick requested a 6 week stay as well as neglected to direct you to a more conveniently located ‘in network’ doctor.

    Since you have only popped for the phone consultation…I suggest that you read the Enbrel For Alzheimer’s thread in the Medications forum on another Alzheimer website. Will post a link below:

    http://alzheimers.infopop.cc/eve/forums

    While you are there…I also suggest you attempt to save yourself cost of the $5,000 evaluation fee, and the additional cost of travel by doing some reading and taking a bit of time. Follow Bob Lee’s directions to get together a packet and using it to locate an “out of network” qualified physician, hopefully one involved in your loved ones care to see if Enbrel is appropriate.

    By the way….Bob Lee’s latest video of Linda is posted at:

    http://www.youtube.com/user/tumates

  • April 29, 2008 at 9:18 pm

    The only other doctor that Dr. T mentioned to me was Dr. Griffin at Un of Arkansas. I would appreciate any name & phone # or email address from any others closer to us. We are in Western KY. I also understand now that there is a Dr.Nelson Kraucak in the Orlando FL area. Again, that is much closer than LA. Please respond. Thanks, loisharper29

  • April 30, 2008 at 1:46 am

    Hi..Do follow Skericheri’s advice. Put together all of the information and work with your doctor caring for your loved one. If he/she will not inject the Enbrel, ask him to recommend someone who will. Important to follow advice of your physician.

    Dr. Griffin is a fine researcher and a PhD not an MD. She may be able to recommend a physician for you as well.

    Good luck!

  • April 30, 2008 at 4:25 am

    Lois—Either you are a speed reader…or…You noticed that I posted the name and city of the Florida doctor in a prior post on this thread. I have heard rumors that other physicians have paid their fee for training by Dr. Tobinick and may also be administering off-label Enbrel injections. Unfortunately, the rumored locations would be further away.

    I don’t know anything about you or the degree that your loved one (or you) has been compromised by Alzheimer’s or the size of your pocketbook. For your information Charlie received his diagnosis in 10/05 and is currently classed as moderate. Aside from having no short term memory, not conversing as much as he used to, and a lack of ambition and get up and go, he functions normally. Our pocketbook would probably be rated as moderate. If our pocketbook was bigger, I would probably not be willing to pay what I believe to be ransom to Dr. Tobinick, or one of his ‘in network’ trained professionals to administer a seemingly simple off-label injection of Enbrel. (Do your homework and read the other thread)

    Personally, I believe that off-label use Enbrel will prove to be a valuable tool in combating Alzheimer’s disease. Using a right tool at the right time is something that I also believe in. It is my feeling that there is not enough information for me to figure out when the time is right for Charlie. Our life is good. His health (physically and emotionally aside from Alzheimer’s) is good. It will probably be awhile before I get out my file folder of documentation and look for an ‘out of network’ doctor. When I find one, I will not shout out his name by entering it in a forum post.

    Before you start off-label Enbrel treatments on your loved one (or for yourself) I suggest that you think carefully and evaluate the potential risks. Read the latest Enbrel warnings. Look at the YouTube videos and set realistic expectations.

    Don’t start something that you may not be able to follow through on over the long haul. I have heard a rumor that off-label Enbrel treatments hold for 3 years if given for 3 months. I question the validity of it. In my opinion the initial press reports of immediate almost ‘Eureka moments’ do not appear to have been replicated by Dr. Tobinick or sources inside or outside of his network. The 3 year holding period may not either.

    To balance this thread I’ve gotten the permission of a friend (who questions the value of off-label use of Enbrel for Alzheimer’s) to quote a portion of a recent e-mail. I strongly disagree with his conclusion…but consider his thoughts as valuable as mine

    “My inclination, dear Cherie, is that this whole Enbrel thing is a scam. A way for some shady folks to con desperate people out of money. This sort of scam has been run over and over again. There are always plenty of gullible people out there. Sick people. Wanting cures for everything. Cancer, Alzheimer’s, you name it. Takes only a handful to start spreading the word. And, oh, so many people get bilked. Give me anybody afflicted with Alzheimer’s. And I can video tape them. On bad days. On good days. And I can manipulate the videos in such ways to show dramatic improvement. From one day to the next. That’s the nature of the disease. Good days and bad days. Some days, I could fool myself into thinking Jeanne was cured. Or that she really didn’t have Alzheimer’s. –Jim”

    If you do decide to move ahead , please post the results on the thread in the other forum as well as here. In doing so, you may help others by making their decision an easier one.