• 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

  • 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 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 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.

  • May 2, 2008 at 5:48 pm

    Dr. T and his legal use of a loop hole in the current U. S patent laws that allows individuals to file “claims” for methods of drug delivery for many common patented drugs has got me really angry.

    That those procedural patents are not valid in some countries outside of the U.S. makes me even more irate…because…Should off-label use of Enbrel treatments as a tool in fighting Alzheimer’s become standard procedure…Others will be able to take advantage of it at a lower price than my loved one.

    I just came upon another relatively rare (but quite fatal) condition whose ‘victims’ may soon be held ransom to what I consider to be Dr. T’s excessive licensing & royalty fees.

  • May 5, 2008 at 4:01 pm

    I have heard there is a clinic in the Detroit, Michigan area where a couple of doctors are trained by Dr. Tobinick to perform the injections.

    I hope the information helps. I will try to get more information.

  • May 9, 2008 at 6:07 pm

    I don’t know this first hand, but from e-mailing caregivers I learned that there is now a doctors trained in Kentucky, as well as NY, MI, TX, FL, OH and IN, also there are 2 untrained doctors in TX and NJ. If you paid for a consult, they should give you this information. Call them bak!
    I agree with a different conclusion, that the patents did not stop the drug companies from running a trial. They have enough money to pay the royalty fees. They are running trials on a new drug and don’t care about Enbrel even if it’s helping patients. The patents keep the drug companies from “hiding” this new treatment The fees from the patent and his treatment though are too much, and should be lowered if he wants to get htis moving. The drug companies only care about money, i’m hoping Dr. Tobinick cares about the people too and lowers his prices.

    Hope

  • May 12, 2008 at 2:43 am

    Alzhope—I’m not a lawyer and not medically trained…but I will share some opinions.

    I read your post and the sentence “The patents keep the drug companies from “hiding” this new treatment” totally confused me.

    One of the ‘drugs’ mentioned in the Procedural Patent # 20070196375 granted Dr. Tobinick on 08/23/07 is Bapineuzumab. Phase III Clinical Trials are just now getting kicked off.

    The procedural patent says “Golimumab is currently in clinical development by Centocor/Schering-Plough for treatment of rheumatoid arthritis, with potential applications for uveitis, asthma, and Crohn’s Disease.”

    How can someone ‘hide’ a procedure as elementary as a simple injection before the ‘drug’ is even made available to the public?

    The following is a list of the conditions listed in the above patent:”…neurodegenerative diseases, including Alzheimer’s Disease, Parkinson’s Disease, amyotrophic lateral sclerosis; for eye disorders or diseases including, but not limited to, macular degeneration, diabetic retinopathy, sympathetic opthalmia and retinitis pigmentosa; disorders of hearing, including, but not limited to sensorineural hearing loss or presbycusis; central nervous system (CNS) tumors, including tumors of the brain; for other diseases or disorders of the brain, including, but not limited to vascular disorders such as stroke, transient ischemic attack, vascular dementia, and cerebrovascular disease; infectious diseases of the CNS, including viral and bacterial infections; for sciatica, cervical radiculopathy, and other forms of disc-related pain; for low back pain; other diseases or disorders involving the spine, the spinal cord, the spinal nerve roots, the brain, eyes, auditory apparatus, or other structures of the head.”

    I may be wrong but…I have the opinion that instead of protecting anything from being hidden…Dr. Tobinick is attempting to use a loophole in our procedural patent system to set up a ‘network’ and extract a ransom from ‘victims’ of often fatal conditions.

    I feel a great deal of sympathy for those with amyotrophic lateral sclerosis (Lou Gehrig’s disease). I believe that they remain fully cognizant throughout most of the wasting process. They won the ‘condition lottery’…There are only about 30,000 cases in the US. Their research budget is limited. To have a elementary procedure ‘claimed’ before a drug is even discovered seems totally unfair.

    [/b]

  • June 4, 2008 at 11:38 pm

    I have been doing research for a close friend for days it seems.
    Bottom line, in my view, and from what I have been able to glean,
    I like others feel that its strictly about the $. Dr. T. also I am told is allegedly to be very “lawyered up. “. I have also found out from other sources, including medical, that this isnt rocket science, and perispinal injections are done everyday. There also is some question as to how the patents can be enforced, its like someone having a patent on epidurals?? But nobody wants to defend an expensive lawsuit. Mr. Lee was obviously right on track finding someone else to do it..not that difficult. In my opinion sooner or later someone will be doing it across the border where the long arm of American Litigation can’t reach and hopefully by someone who is indeed patient sympathetic and the cost will come down considerably. Hopefully sooner than later.

    My view only.

  • July 24, 2008 at 11:12 pm

    My Mom is getting the treatments, although we are at a standstill right now since she had major surgery a week ago. I am anxious to start the treatment again, but need to wait till the staples are out of her stomach!

    The “risks” have been non-existent for us. Her physical recovery from her surgery has been great — no sign of a weakened immune system – She improved after the first few injections, then was maintaining as long as we kept them up weekly. She had been in a quick decline and this treatment stopped it, I am so grateful to have her back again!

    We started the treatments in March of this year at Dr. Tobinicks office. There are two sides to every story, and although I myself wish it was less expensive, I realize how much time and money this Exceptional Man has spent on this treatment, with barely any compensation for many years. He won’t give his patients placebos, he can’t. He knows it’s working and refuses to give up. The talk about patents started up a few months ago, and some people cannot get that out of their heads. But before too many people get pushed away, I need to voice the other side of the coin.

    Patents are there to protect doctors and patients. The fact that he has many patents means that he is a scientist. He offered his treatment to Amgen long ago, then to many others. They would not accept his “TNF” theory. They thought he was wrong, and “muddied” his name along the way, pushing doctors away from a treatment that could have save others. His patents are not valid for Clinical Trials, they are not valid out of the U.S. So patents did not stop anyone from doing a trial. Disbelief is what stopped this from helping millions of people…not patents. My goal, instead of just putting the man down at every turn, has been to get the word out to as many people as possible, and if they have the resources, to get this treatment for their loved ones as soon as possible. My family is pulling together to make this accessible for us, many of you can too. The number of trained doctors is growing. If you call Dr. Tobinick’s office, they will give you the name and number to the closest doctor to you — no charge. My other most important goal is to get FDA approval so that insurance will help pay for it, and to spread the word so that someone finances a clinical trial. Amgen has refused, and in my opinion they are the culprits who put a stop to this, thinking they could do better by partnering with Wyeth and Elan researching another drug — as I said, just my opinion. I believe they are the ones who kept this treatment down, and made Dr. T go about it the way he did. Clinical Trials cost Hundreds of Millions of dollars. A doctor in a private practice doesn’t have that kind of money. He chose to continue treating patients, publishing his work and going to conferences. Amgen’s statement about the treatment includes lies. Dr. Tobinick’s work was published in peer reviewed journals, and he did present his work at appropriate conferences, including the ICAD 2006.

    Beyond all the arguements on whether he charges too much or whether he “did it wrong” doesn’t really matter to me anymore. If you can’t afford it or it’s geographically unattainable, then please know that a few of us are doing everything in our power to get this spread throughout the world so that your own doctors will agree to do the treatment, and to get approval so that insurance will help pay for it. Bring your doctors the study, and all proof you find about the validity of this…don’t take no for an answer. Tell them to get trained…it will save many lives if they do.

    I have a different opinion of Dr. Tobinick, and I understand why he does what he does. He has been put down and attacked for years, but he keeps treating patients…not for money, but because they are getting better. I don’t know how he takes all this slander, but he does, and because he didn’t quit, my Mom laughs and sings again. Thanks Dr. T.

    Felicia