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Enbrel Treatment For Alzheimer's
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skericheri



Joined: 06 Mar 2008
Posts: 92

PostPosted: Tue Apr 29, 2008 10:25 pm    Post subject: Reply with quote

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.
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skericheri



Joined: 06 Mar 2008
Posts: 92

PostPosted: Fri May 02, 2008 11:48 am    Post subject: Reply with quote

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.
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skericheri



Joined: 06 Mar 2008
Posts: 92

PostPosted: Sun May 04, 2008 2:28 pm    Post subject: Reply with quote

Noticed a Mayo Clinic article on the use of off-label Enbrel treatments as a tool in fighting Alzheimer's. At the end of it is a comment section. I'm posting to suggest that anyone wanting to see the value of this off label treatment either proved or disproved should read the article and post a polite comment requesting immediate research at the following link:

http://mayoclinic.com/health/comments/MY00036_comments/POST=1#post

Maybe the Enbrel issue will be settled once and for all.
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miketasher



Joined: 17 Apr 2008
Posts: 1

PostPosted: Mon May 05, 2008 10:01 am    Post subject: I understand there is a clinic in Michigan Reply with quote

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.
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alzhope



Joined: 09 May 2008
Posts: 1

PostPosted: Fri May 09, 2008 12:07 pm    Post subject: Kentucky Doctor Reply with quote

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
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skericheri



Joined: 06 Mar 2008
Posts: 92

PostPosted: Sun May 11, 2008 8:43 pm    Post subject: Reply with quote

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]
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yachtmama
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PostPosted: Wed Jun 04, 2008 5:38 pm    Post subject: Enbrel and Dr. Tobinick Reply with quote

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.
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gbristow



Joined: 01 Jul 2008
Posts: 1

PostPosted: Tue Jul 01, 2008 3:57 am    Post subject: Re:Enbrel Treatment For Alzheimer's Reply with quote

I have read throughout article on" Enbrel Treatment for Alzheimer's”, however the way you have put it across was really intelligent skericheri. Although the language you used was a little technical I was able to get some part of it. Incase you want people to leave more comments; I suggest you make it more interactive by asking more questions in your article.
--------------------------------------------
Gary Bristow
Addiction Recovery Arkansas
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famc17



Joined: 24 Jul 2008
Posts: 2

PostPosted: Thu Jul 24, 2008 5:12 pm    Post subject: Reply with quote

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
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skericheri



Joined: 06 Mar 2008
Posts: 92

PostPosted: Sat Jul 26, 2008 12:10 am    Post subject: Reply with quote

Felicia---You may disagree with me...but...On the whole, I believe that I quite fair in my presentation concerning Dr. T and the potential value of Enbrel as a tool in fighting Alzheimer's on this thread.

Voicing an opinion is not slander. Every human being has that right. It is truly unfortunate that Dr. T's practices have caused so much controversy that they appear to have slowed down acceptance of the basic concept by the Alzheimer research community. It is nice to see the situation slowly improve.

gbristow---I'm sorry for getting technical. Not being trained in science I've spent a great deal of time confused while attempting to gather information. That confusion may have transferred itself to my typing fingers.

Getting comments was not my goal when I started this thread. Soliciting support for research into the value of Enbrel as a tool in fighting Alzheimer's was. In attempting to do this, I tried to present the facts in a way that someone of average financial status would not feel guilty if they decided that it was not prudent to mortgage the family homestead, cash in their life savings or stand in the street with a sign that read: "Will work for perispinal Enbrel injections".

It is evident that as the thread grew...My discontentment over the practices of Dr. T did also. Just to fill everyone in on my current status...

Although I believe that Enbrel has value as a tool in fighting Alzheimer's I have not made any move to get in-network or out of network Enbrel treatments for my partner. We're not rich. His decline has been relatively slow. I've formed a mental picture of the point where I will get out my paperwork and go looking for an out-of-network source.

Support for additional research into the concept is growing. Paul Harvey mentioned Enbrel & Alzheimer's in a radio show...The Alzheimer Association appears to have softened their stance. Assuming Amgen eventually gets off of their duff and requests permission for a clinical trial from the FDA, some of our loved ones may live long enough to eventually take part in one...but...I suspect that during their lifetime public funding for Enbrel injections will be nothing but a dream. I hope that a more low cost way to slow down or stop progression is found quickly.
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Marcus



Joined: 06 Mar 2008
Posts: 132
Location: Tennessee

PostPosted: Sun Oct 05, 2008 12:33 am    Post subject: Reply with quote

At Cambridge Healthtech Institute's Third Annual Drug Repositioning Summit on Monday, October 6 in Boston, the audience is scheduled to hear, as a Keynote Presentation, the story of how an individual physician has charted an entirely new course for a therapeutic which is already one of the most successful of all time.

Enbrel® (etanercept) has proven effective for treating a host of medical conditions, from rheumatoid arthritis to psoriasis, generating more than $4 billion dollars per year in revenue for its owner, Amgen. Yet despite this success Amgen has failed to initiate study of etanercept's emerging off-label uses in the field of neurology, which could potentially address enormous unmet medical needs and help people throughout the world. Etanercept is one of a new class of medications, produced through biotechnology, which specifically neutralize an immune signaling molecule called TNF. Excess TNF is centrally involved in scores of diseases, including rheumatoid arthritis, Alzheimer's, sciatica pain, and psoriasis. In Alzheimer's disease excess TNF has been documented in the cerebrospinal fluid, and the rationale for anti-TNF treatment is supported by genetic, epidemiologic, basic science, and clinical data (1-11).

The Keynote Presentation, entitled "Repurposing of Enbrel for Alzheimer's Disease" will be made by Edward Tobinick MD, Director of the Institute for Neurological Research, a private medical group, inc. in Los Angeles. Dr. Tobinick is the inventor and patent holder of the etanercept off-label indication for Alzheimer's Disease, as well as more than 200 different inventions involving new off-label uses of TNF blockers, such as etanercept, in neurology, opthalmology, and for a variety of additional innovative clinical indications(12-17). Many of the novel uses of etanercept which Dr. Tobinick invented, beginning nearly a decade ago, such as for sciatica, Alzheimer's, and myasthenia gravis, have subsequently been supported by peer-reviewed, published studies performed by independent researchers from academic centers across the globe(18-26).

As an example, a recently completed, double-blind, placebo-controlled study conducted by independent researchers at Johns Hopkins/Walter Reed Army Medical Center has confirmed the efficacy of etanercept for sciatica, using a patented, perispinal method of administration of etanercept which Dr. Tobinick invented(27).

Dr. Tobinick has been invited to and has presented his clinical and research findings at multiple prestigious medical research meetings, including this year's International Congress on Alzheimer's Disease (ICAD 2008), the 7th International Alzheimer's Drug Discovery Conference; at the Karolinska Institutet in Stockholm, Sweden, the home of the Nobel Prize in medicine; and in multiple, peer-reviewed, published medical articles(1-5, 27-31).

His published, peer-reviewed scientific articles have been cited by more than 150 scientific publications from around the world(1-6, 18, 20, 23-25, 32, 33). In addition, his groundbreaking work has been recognized by the Dana Alliance for Brain Initiatives, the world's leading organization of neuroscientists, which counts among its members ten Nobel Laureates(34); by leading journals, including Nature Clinical Practice Neurology(35); by the Faculty of 1000 Biology, the expert guide to the most important advances in biology(36); and featured in news articles from around the world(37-39). Despite the immense potential to help countless people, the great unmet medical need, and their enormous continuing revenue from etanercept sales, Amgen has yet to confirm its intention to begin even preliminary clinical study in this direction.

A failure to investigate is perhaps even more puzzling in view of the increasing scientific support from cutting edge research, which is in addition to the genetic studies which have identified excess TNF as a therapeutic target in Alzheimer's(9, 10, 33, 40-43). For example, scientists from the Trinity College Institute of Neuroscience in Ireland have demonstrated that defects in hippocampal learning and memory mechanisms created by forms of amyloid are mediated by TNF(41-43). Perhaps even more significant is the recent identification of TNF as a gliotransmitter which regulates synaptic transmission in the brain(39, 44, 45).

The synaptic effects of TNF which regulate learning, memory, and neurotransmission provide a most exciting area for scientific research. These synaptic effects, which may occur with extreme rapidity, provide a rational and scientifically plausible explanation for the rapid clinical effects of etanercept which have been documented in multiple, peer-reviewed scientific studies and in multiple patients(1-5, 18, 28, 30). To ignore this new direction in scientific thinking, which recognizes the role of TNF not just in inflammation but also as an immune regulator of synaptic communication and other aspects of brain function, would be to impede scientific progress.

Fortunately, with the expiration of Amgen's patents on etanercept approaching in 2012, other pharmaceutical companies will soon have the ability to explore these extraordinary discoveries which have the potential to help millions of patients around the world.

The Keynote Presentation will cover over ten years of research, highlighting the difficult hurdles which new breakthroughs in science and medicine must surmount before they are even considered by the scientific and medical communities.

For further information on this Keynote Presentation, please visit AlzheimerVideoNews.com , or the INR® website.

Institute for Neurological Research
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Marcus



Joined: 06 Mar 2008
Posts: 132
Location: Tennessee

PostPosted: Wed Oct 08, 2008 8:59 pm    Post subject: Reply with quote

This unique, unprecedented, patented[1] Alzheimer's treatment is available now in the U.S. exclusively at the INR® in Los Angeles and by INR® trained and licensed physicians.


Call today for appointments and information (310) 824-6199
--------------------------------------------------------------------------------
The INR has an active Physician Training Program for medical doctors. For further information please click here.

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http://www.nrimed.com/
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skericheri



Joined: 06 Mar 2008
Posts: 92

PostPosted: Sun Oct 12, 2008 10:50 pm    Post subject: Reply with quote

Unless Amgen gets on the stick and announces clinical trials (They are the only one allowed to petition the FDA for the right to hold them)...It looks as if Dr. Tobinick is the only entity attempting to reposition Enbrel.

In some ways I cannot blame Amgen for their reluctance. In my opinion Dr. T. may have made some poor (or questionable) choices that appear to have cast doubt on his credibility. Enbrel has been a moneymaker for Amgen. They have taken considerable heat over off-label usage and may be reluctant to set up clinical trials without collaborating evidence from ‘impeccable’ independent sources.

I imagine filling out grant forms is tedious…but…In my opinion…If Dr. Tobinick has not already done so...I think that he should approach sources of Alzheimer’s research funding with pen and hat in hand. With some ‘business concessions’ (that help to bring down the cost of in-network treatment) on his part, I believe they might provide a willing ear.

I think that the choice is his. If he is happy with his current level of ‘business’ and recognition, he will do nothing but publish press releases, continue to make the ’speaking circuit’, produce more videos and hope for the best. If he hopes for timely scientific recognition and perhaps a place in medical history as a pioneer in the fight against Alzheimer’s, he may have to make some changes.

In the past months I have learned more about Enbrel for Alzheimer’s. It is definitely not a cure. I don’t know for certain that progression of AD is stopped (or even slowed). I’ve watched Dr. Tobinick’s exciting video’s showing dramatic changes...but...Most actual caregiver reports fall short of that mark. (Some caregivers have started and discontinued Enbrel treatments for this reason.). At this moment in time...because it is expensive and still relatively untested...I’ve come to the conclusion that the hope that Enbrel injections may help Charlie might more valuable to me than the potential results.
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skericheri



Joined: 06 Mar 2008
Posts: 92

PostPosted: Sun Dec 25, 2011 8:30 pm    Post subject: Reply with quote

A clinical trial of Enbrel as an A/D intervention has been up and running since 01/10/2011. The only location is in the UK at the University of Southampton. The collaborators for this trial are the Hampshire Partnership NHS Foundation Trust and Wyeth (a wholly owned subsidiary of Pfizer.) I have heard no feed back on the participants.

During the time that elapsed between my posts to this thread I became aware of individuals whose death may have been hastened due to Enbrel treatments and was disillusioned by the level of hype that existed on a now deleted thread on the Alz. Assoc. forum...and...Although I could have had Enbrel injections administered, I decided against doing so.

The Dimebon (Donepezil) study that Charlie participated in for long over a year provided hope and results that helped get me through. Unfortunately Charlie's participation ended when Pfizer decided to disband his trial group.
I can't help but think that Pfizer's decision to stop some of the Dimebon trials was influenced by the fact that they merged with Amgen and now own Wyeth...and...may have decided that more money could be made by selling an injection than a pill that had a long running safety track record in Russia during the time that it was marketed as a decongestant.


Charlie lived about 1 1/2 years after his participation in the Dimebon study. With the exception of gradually increasing losses in the areas of short term memory and willingness to become engaged his condition remained the same until he fell in December of last year. A/D contributed to his inability to fully recover from a fall that eventually led to permanent placement.. Charlie passed peacefully in a local hospice house.
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