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Enbrel Injections are working for Mom!
Internal Administrator
Posted: Thursday, January 5, 2012 5:45 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: Felicia

Hi All,

My Mom has recieved 6 weekly injections of Enbrel and has improved drastically. Her ADL (Activities of Daily Living) have changed the most, making her happier, having her join in conversation and not getting so "foggy" all the time. She still has moments where she will walk the wrong way when heading to the bathroom, and it still takes a few moments for her to register what she is doing sometimes...but it does register now, most of the time without help. Please see our youtube video of Mom Before and After Enbrel. At the end of the before portion, you will see her just sitting in her chair. That's all she did all day long in the last month before the treatment. It was very hard and sad for me to see this happening to my Mom, the only thing that kept me going was the hope that the treatment would work.
http://youtube.com/watch?v=OhTtJkN3o2Y
And the video of me explaning the treatment:
http://youtube.com/watch?v=rAZhX7LEZeU

The website of the INR clinic where the treatments are given, and an explanation of the case study and testimonials is at:
http://www.nrimed.com/

They are 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
There has been a lot of controversy on this treatment, but I took the risk and found out that it's real! We are hoping that many others get the treatment so that the data will show the need for medicare to cover this expensive treatment. Please tell your doctors to look into this. They will tell you it's not real, and many will have never even heard of it. Doctors are only human, and they can't do or know of everything. The more this gets known to the professionals as well as the patients, the better.

Thanks Felicia
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: Ger

16 April, 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.
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: Felicia

(I will be sending this letter to Amgen, in response to their recent statement regarding Enbrel, which GER has posted all around this forum. I wrote to them once, and they sent me a "pasted" statement about how there's not sufficient data, etc. I am also posting this where I feel it relevant in other forums where we have been speaking about Enbrel for Alzheimer's)


A caregiver’s response to Amgen:

Dear Sirs,

My Mom has had Alzheimer’s for 3 – 5
years (at first we thought it was “just” dementia) and I have watched her deteriorate progressively, despite the best available medical care from her neurologist and GP; not from afar, but up close, since I had my
parents move in with me 4 years ago because
of her increasing disability and because
it was getting too hard on my Dad. You may consider my Mom a case report, but she is a wonderful human being; and her improvement after being treated with the medication you own, etanercept, in a unique new way (perispinal)) developed by
Dr. Edward Tobinick, has been wonderful
and marvelous to behold. She is now able
to do things she could not or would not do before this new treatment; her normal activities of daily living are enriched and significantly better, which to me is the
best part. These observations are not just
my own, they are those of all of my family members, including my children, boys aged 19, 17 and 10. They don’t usually notice things like this, but they couldn’t help but notice Grandma’s smile and comments that had disappeared only two months earlier.

We are not alone. Our same experiences have been reported by multiple other families, in watching the daily activities of their own family members improve after beginning treatment by Dr. Tobinick.

How cruel your recent “Amgen Statement of Alzheimer’s Case Study” is. You call the
rapid effects all of our families have
observed in our loved ones “implausible”
–how dare you impugn our personal
observations, when you have never even
made the effort to see for yourself. You refuse to recognize the human benefit
which the drug that you own is having. You call us all “case studies”, we are people,
who are sharing our personal experiences
with the world.

How can you claim to be “aggressively
pursuing research to help fight grievous illnesses” when you refuse to support or initiate further study of your own drug for Alzheimer’s disease despite multiple
positive published studies and an
established scientific rationale.
Why have you ignored the fact that
multiple prestigious neurologists and scientists have recognized the promise
of Dr. Tobinick’s work with the drug
which you own? Those recognizing the
promise of this new approach to treatment include the Dana Alliance for Brain
Initiatives (see their 2007 Progress
Report on Brain Research at http://www.dana.org/news/publications/
detail.aspx?id=6620&p=4, the prestigious neurology journal Nature Clinical Practice Neurology (see their April 2008 issue at http://www.nature.com/ncpneuro/journal/
v4/n4/full/ncpneuro0763.html): and scientists from the National Institute of Health (see reference 1 below)

1.http://www.ncbi.nlm.nih.gov/pubmed/17908040?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

and Northwestern (see reference 2).

2.Van Eldik LJ, et. al. Glia proinflammatory cytokine upregulation as a therapeutic target for neurodegenerative diseases: function-based and target-based discovery approaches.
And recently, the Alzheimer’s Society in
the UK has called for clinical trials to
begin studying perispinal etanercept for Alzheimer’s disease.

Why do you mischaracterize the off-label treatment as experimental? The off-label
use of etanercept for the treatment of Alzheimer’s disease, as utilized to treat
my mother, is both legal and not experimental
- it involves the use of a medication the FDA has approved for treating humans, albeit for different indications. Off-label use in this way is legal, and off-label use is commonly utilized by physicians, particularly for illnesses, such as Alzheimer’s, where the existing FDA approved medications are inadequate.

Why do you mischaracterize Dr. Tobinick’s published work? His studies have all been published in peer-reviewed scientific journals, including respected journals such as Current Alzheimer Research. Why did you mischaracterize the 15 patient pilot study published by Dr. Tobinick, two-board certified neurologists, and a board-certified rheumatologist as “anecdotal evidence” or as a “case report? Why do you mischaracterize
Dr. Tobinick’s scientific presentations? He has presented his work at the 7th
International Alzheimer’s Drug Discovery Foundation Conference; at the Days of
Molecular Medicine Conference at the
Karolinska Institutet; and an abstract
of his work was at the last ICAD Conference
in Madrid (http://www.sciencedirect.com/
science?_ob=ArticleURL&_udi=B7W6D-4KBG8NV-1G9&_user=4423&_rdoc=1&_fmt=&_orig=search
&_sort=d&view=c&_acct=C000059605&_version=1
&_urlVersion=0&_userid=4423&md5=
8f7d00c668ed3af41c72ecc1209b58c2),
which is known as the largest Alzheimer’s conference in the world!

Amgen’s refusal to investigate the potential
of its own drug will be recognized as the personal failures of Kevin Sharer, its
current CEO; and of Roger Perlmutter, its current scientific director. Why does Amgen management continue to mischaracterize and distort the facts?

An “aggressive pursuit of research” would be the sponsorship of a large and proper double-blind, placebo-controlled trial of etanercept for the treatment of Alzheimer’s disease,
by independent researchers trained by Dr. Tobinick in the perispinal administration method which he invented and has continued
to use so successfully for my Mom and now
many others. To do anything less will just delay the acceptance of this extraordinary
new advance in scientific discovery, and
cost lives. Amgen cannot continue to hide behind its blatantly false “scientific” rationale. With over 3 billion dollars of
2007 revenue from etanercept sales, how can
you justify not investigating the clue which Dr. Tobinick has handed to you? The 5 million patients with Alzheimer’s disease and their families, all without a truly effective treatment, will not soon forget your
failure to investigate, and, by so doing,
your prolongation of their (and my) agony.
How can your shareholders let Amgen management continue this perversity of science? Should they have an unshakeable belief that Roger Perlmutter is always right? Or is it just possible that Mr. Perlmutter’s failure to support clinical trials of perispinal etanercept for Alzheimer’s will be seen, alongside the Amgen fiasco of anemia drugs,
as another in a series of broad and
serious miscalculations by the current
Amgen management?

Felicia
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: skericheri

Come now Felicia...We both know that the alternative that I was hinting about was a file folder and a bit of leg work and not Aricept (which made Charlie ill)or Namenda.

As far as Dr. T gathering data about those most likely to be helped...That is nice. It is a shame that before the data is gathered people have to pay for his injections. Since the procedure is so expensive...The least that he can do is offer a money back guarantee.

What we need is a clinical trial. I hope that one is announced at the conference.
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: Felicia

Editing
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: crella

[quote]How about Aricept and Namenda. Boy, those commercials are convincing. Did anyone hear the "may help" in the Aricept advertisement?[/quote]

Yes...the fact is that with these biologics (Embrel etc) there are definite responders and non-responders to them when used for arthritis. 10-15% of patients do not respond after months of treatment...even in the case of arthritis it is a huge amount of money to spend for a 'maybe'. I've heard people say 'Only 10% don't respond, why not use it?' but thousands of dollars for months for no result is extremely frustrating for families. There are side effects, too...

Once they can tell who will respond and who will not, it may be easier to decide whether to use it or not.

Technically, off-label uses, ie, unapproved uses, are considered experimental until enough data has been accumulated to approve the drug for that use. It is not a case of being harsh on the part of the drug company, that is how drugs and their uses are categorized.
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: Felicia

I must honestly say that I didn't know what you meant and still am not sure what you mean by a file folder. I'm now guessing you're talking about the new clinical trial that's starting in Phase III soon.

I have stated before that I am all for anyting new that works. It's just that I know as well as you that clinical trials take a long time to finish, and right now, I have found something that is working for my Mom and only about 60 others because the drug company Amgen (who is working with Wyeth on the new Phase III drug) would not give their support of the Enbrel treatment. And in MY opinion...yes, my measly opinion I feel it is because they can't afford to have people see the results of Enbrel. Many many people, including me, would rather pay someone for something that's actually working than go through a Clinical Trial not knowing if the results are good or not, and taking a chance on getting a placebo. My Mom is worth every penny, and Dr. Tobinick deserves to be paid back his Millions that he has put into this. I have a feeling someone has been feeding you wrong information. I am Rose's daughter, that is all. I don't get a discount for any treatments, we pay top dollar and will sell our house before I let my Mom become a vegetable. I am an advocate of this treatment because it works. That is all. You want people to not do it because the doctor charges too much. I agree that the cost is tremendous, which is why I am doing all of this. Instead of attacking the man that has given back my Mom a life with quality, I am choosing to attack the real culprits. The ones who know this works and have held Dr. T back for at least 6 years. He has tried to spread the word and has been stopped at every door. Why, Why??? Amgen, Wyeth, Elan, and the makers of Aricept, Namenda and other Alz Drugs will all lose money when this gets known. This is not hearsay, it is a fact. Well too bad for them! They are businesses, they will survive...but their drugs weren't helping my Mom and I want her to survive more than their business!

Open your eyes Skeri and see what's going on here. I need this approved, and when you attack Dr. T, it just puts up another wall and makes people think this is all just a big Infomercial! We are taking the best route. You spoke to me about data, saying the Neurologists could provide better data than the doctors that are being trained by Dr. T. Who told you that??? Doctors all go through the same training, until the end of their schooling when they choose a specialty. They are all very well educated and all know how to put together data. Doctors don't choose Neurology because they're smarter than anyone else. It's just where their interests were. Dermatologists are just as intelligent, and didn't chooose dermatology because it was easier than neurology. It's just where their interests were.

Felicia
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: Felicia

In response to Crella above:

Most people will try it for a month, and if they don't see a response, they will stop. I don't know anyone that has continued treatment longer than that if it wasn't working. It's pretty apparent if it's helping. For those who are not too far into the disease, the improvement will probably be slight, but the maintaining is the biggest plus for many of us.

There are several patients who have been maintaining for over 4 years now...it hasn't stopped working for them yet. I've met 2 of them at the office...that's enough for me. When it stops working for Mom, we will stop...but so far...11 months and counting!

Thanks, Felicia
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: skericheri

Felicia---I guess that you did not read my post of page 14 of the Enbrel for Alzheimer's thread or you would know exactly what I was referring to as far as using a file folder and doing some leg work

I am not attacking Dr. T or his use of Enbrel in fighting Alzheimer's. I do personally hold some opinions. The fact that his patent was issued in 05/07 and news of his treatment did not break until 01/08 makes it appear to me as if Dr. T may gave been more interested in patenting than publishing and sharing. I also have the opinion that by patenting the procedure Dr. T may have discouraged Amgen from funding a clinical trial and may also discourage others from holding one.

My figures may be incorrect but from reading our other thread I got the impression that Dr. T charges each of his trained professionals a fee of $3,000 per patient per year for the privilege of using his patent (that boils down to $57 of each doctors visit if injections are administered weekly) plus a training fee of $5,000. My guess is that if Salk demanded that much...Polio would still be rampant in the United States.

It is also my opinion that Dr. T and his trained professionals have no incentive to collect or publish data on those who do not show positive results from this procedure and could lose a good deal of money if a clinical trial took place and the results were unfavorable.

I want this treatment to be approved as much if not more than you do. I honestly believe that it is valid. You are the one making this thread look like an commercial. I was just attempting to inform people that there is no guarantee of success before plunking down a consultation fee that is a considerable amount of money.
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: skericheri

Felicia---If you doubted for one moment that I would immediately after reading AlCal's post on the Enbrel for Alzheimer's thread, you misjudged my motives for posting on this thread. BTW...I think I did a pretty good job considering that I did not finish my first cup of morning coffee.
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: Felicia

Maybe I should stop posting if I'm making it look like a commercial. I'll have to think about that.

Good-night!
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: skericheri

New information has been received from AlCal that indicates some success after his father's Enbrel treatment. I felt that it would only be fair to post notice of it here. Below is a partial quote...The full posting can be viewed on page 15 of the Enbrel for Alzheimer’s thread.

“Bob, Felecia, Steve and others: Thanks very much for the replies, interest and encouragement. I spent a day or two regrouping with the family and resetting where we had been, what we have observed and where we are today. There have definitely been some signs of progress that we possibly overlooked due to a very high emotionally charged time...
....No, there was no "eureka" moment but there were definite improvements. For instance before the treatment my Dad stated that there were 7 seasons in year, after he knew that there were 4. Before the treatment he couldn't identify the pictures of any of 3 animals, after he was able to get 1 out 3. Before he couldn't tell what state he lived in, after he asked the doctor "what time of year" and answered correctly for the summer months and knew the phone number.
Since the treatment we have noticed other positive signs as well. He told us that his head feels clearer and in the afternoon he was able to recall details about having breakfast out that morning...”.
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: Felicia

In response to Skeri,

First of all, I don't think any newcomber will go out and spend $40,000 a year without researching other alternatves...unless he is a multi-millionaire and just doesn't need money. Second of all, AlCal posted the results after hours of the treatment, not days, weeks, or months. I am praying that he sees results, but it causese me discomfort that you are ready to tell people to dismiss the treatment because there were no immediate results. The results are subtle and take time. And possibly and sadly, they may have no improvement. How about Aricept and Namenda. Boy, those commercials are convincing. Did anyone hear the "may help" in the Aricept advertisement? It is very subtle and misleading. I actually have it on video when I was taping my Mom just sitting in her chair -- Funny coincidence.

I am not trying to be misleading here at all. Dr. T is submitting the data, which is why we now know that the effective rate is 90%, which is huge! I believe he went over this at the Conference he was just asked to speak at in Arkansas yesterday. He is in the process of trying to understand who is a good candidate and who is not, and it just isn't cut and dry...just like with Aricept and Namenda. And yes, they are much more affordable...but they are no where near as effective. Our goal here is to get this approved so that insurance and medicare pay for it...Dr. T is training others. When it gets more available, I am praying the cost will go down. My other goal is not to send people to Dr T, it is to show that this treatment works for most and is a miracle to me and my mom and my family and friends, and to get it approved by the FDA.
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: Felicia

Please see my letter to Amgen regarding their statement in my above post!

Thanks, Felicia
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: skericheri

The thought that a newcomer might see this thread without reading the other Enbrel threads on this forum and proceed to spend what appears to be $40,000 a year on Dr. T's Enbrel treatments before exploring other alternatives causes me discomfort.

This discomfort has increased after reading the posting of a member named AlCal whose father showed no improvement after receiving treatment at a Florida location by a doctor trained by Dr. T . There is another example of lack of improvement located on the Alzforum site. The link is

http://www.alzforum.org/new/detail.asp?id=1738#{A7FFF99A-260E-4AB0-9DEB-4AA549DE9357

Dr. T has has never published information concerning individuals that were not helped by his treatment. Perhaps reading about the success of Felicia's mother will encourage others to spend time writing letters in an attempt to get additional research and a clinical trial started would be a better use of resources. This research could identify poor candidates for treatment.
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: Felicia

Thanks Cherie!
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: Jezza

There's no point in arguing about it! On the one hand, it may make a marked difference. On the the other hand, it might be overpriced. I looked into this myself when the papers were first published, and came to the conclusion that it was financially inaccessible. I don't begrudge the cost, however. He's doing an experimental procedure that has not been well tested, and in the event of a catastrophe of some kind he could loose his career. He deserves to be well paid for his research and his interest in helping the AD community.

On the other hand, I remember from my research that the benefits were most noticeable in early stage AD where little of the brain has atrophied, for lack of a better word. The down side of that, of course, is that the treatment wears off after a few weeks and the patient needs a booster shot. Beginning shots this expensive in the early stages almost condemns you to poverty, and only a millionaire could sustain them for years on end. My grandmother Laurette was first diagnosed in '01 and physically she's still fit as a fiddle. This disease can be a very long process.

And about the patent - that's just good business. He's probably been researching this for years and years and is protecting his intellectual property before some drug company finds out about it and patents it themselves. If he didn't patent it the idea would be stolen from him for sure.

All in all, it seems like an interesting opportunity for those that are willing to take a bit of a risk and have some money to throw down. Nothing says you HAVE to continue the treatment for years on end.
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: Felicia

Thanks Ger, now they don't have to go look for it!

Felicia Smiler
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: Felicia

To correct my above statement:
[quote]They are 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, such as city and when they will be starting treatments.
E-mail: nrimed@gmail.com[/quote]
Anonymous
Posted: Thursday, January 5, 2012 5:45 PM
Originally posted by: Felicia

Update - It's still working!!!

She's maintaining, no complications, no side-effects. As compared to February 2008, she is doing better in some cognitive areas(lost some with setback in July-surgery). She is better in these areas: noticing things around her and making comments, asking questions, feeding herself, enjoying TV shows, laughing with family, asking for coffee, juice or water when she's thirsty, sleeping all night, and just overall mood and quality of life. She had a major setback in July 2008 when we had to stop the treatment and she had major surgery...4 weeks in the hospital. After the surgery, she lost her ability to walk and wasn't responsive at all. She has made an incredible recovery, but still isn't as good as she was right before the surgery. The Enbrel treatments brought her back further than any of her doctors expected, and we are very grateful.

Felicia
 
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