To all: I have taken my Mom in for 2 enbrel injections, and she has definitely improved. As they say. "unprecedented in Alzheimer's. I invite you all to read and join the forum where we have been discussing this for months now.

We need to all get involved to get this drug approved and trials done. We are on page 4 of our Thread now, so it's a long read. Please join the fight in getting this going. I am not affiliated with any drug companies, doctors, hospitals, etc. I am the daughter of a beautiful lady who is getting lost inside herself. We can only afford this for a short time, some people can't afford it at all. I am fortunate to live in So Cal where it is available at UCLA Medical Center. Everyone should know about this treatment...Please spread the word.

Thank you, Felicia

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If anyone is interested, the alzheimers.org forum has an entire thread about Enbrel. I would suggest everyone read it with a large dose of caution as suggested by the organization's own comment on the use of this drug as well as knowledge of the process of the necessary papers and scientific blind studies required before valid researchers can obtain the proper funding to do the necessary tests to offer it for public trials. The dermatologist who is trying to patent the process he uses to inject this drug is treating a few patients at great expense and is offering to train other physicians for a LARGE fee. Felecia's own mother has only been on this drug for a few weeks. Of the 14 patients that the doctor offered as encouragement, one died. Because his testing was not conducted by anything remotely resembling scientific method and blind studies, it is NOT something ANYONE should be rushing to as a miracle cure unless they have a huge bank account and will not be crushed by offering what may be a very false hope. I would encourage people to read all 11+ pages of comments in the forum and pay particular attention not to the claims of miraculous improvement, but to the untried status of this drug for this purpose and to the monetary issues involved.
Here is the link to the forum where this is being discussed... I hope that anyone interested in this will read each and every post and keep track of the "conversation" and controversies surrounding this "treatment." CAVEAT EMPTOR

http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/4081064272/p/1
Until legitimate scientific studies are conducted, I am locking this thread and encouraging interested parties to discuss it at the Alzheimer's Association site.

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Felicia, I am happy for the progress that your mom has shown on this drug. I am a great admirer of people who are willing to take those first risks on experimental treatments. It takes a great deal of courage to make those decisions and a progessive doctor to try. You emailed the manufacturer. Do you think they would work with you on the cost of the meds to see how long the effects are beneficial? It might be worth a try. Thank you for sharing your story with us. It gives me great fope for the future for all of us. I wish we could try it on my Mother. Please keep us informed. I am very interested in someone who has first hand experience.

The jury is so out on this drug and its administration. While I wish everyone trying the treatment well, it is absolutely NOT for everyone nor is it anywhere NEAR affordable for most. Despite improvements, no one has any idea of the long term effects nor has the dermatologist who is trying to patent this treatment done proper studies, papers, etc.

My biggest question is that while it CAN improve some patients, if they are advanced in the disease and their brain has died in certain areas, the drug is not going to regenerate those "black holes" in the PET scans nor is it going to replace the brain shrinkage, etc.

I have been following the discussion of this on the alzheimer's organization website and there is M U C H that is not known.

Like the AD organization itself has clearly stated, while I am encouraged by the meager short-term results seen so far, this is nowhere NEAR something I could recommend nor would I personally consider the treatment at this point.

For Alzheimers/Dementia:

Please see my Mom's Before and After youtube video regardaing the Enbrel Treatments.
Just go to youtube and search;
Before and After Enbrel. There is a video of me also explaning the video and treatment.

I hope this is OK to post, Felicia

I agree that all the studies need to be done, we can be very hopeful that in the future, this will be available to us if we need it ourselves. What I am pushing for, is approval by the insurance companies for the Off-Label use of Enbrel for Alzheimer's patients now. It is perfectly legal, and a common practice for many different medicines and ailments. That is why Dr. Tobinick is able to give the treatment. It's just that we have to somehow keep paying for it. Maybe cancer patients had to do this when Chemo first came out...I don't know.

I am concerned what we will do in 6 months also. My fiance has already offered his financial support, as has my sister and her husband. We will do what we can to keep it going, if it keeps working. Side effects may occur, one of the worse is Lymphoma (small percentage), but what choice do we have...she was spiraling downhill, not saying more than a few words at a time, only talking when spoken too, had that foggy/sad look in her eyes, not enjoying life, incontinent both bowel and urine, can't dress herself, and slowly losing the ability to walk. Now, she still needs help in the bathroom and getting dressed, but it is more of a physical need than a mental one. She is getting up on her own to go to the bathroom, but needs help "cleaning" herself...which I think is an issue for many elderly people even without dementia -- It's hard to reach down there!!! Her Depends are "wet" but no other stuff!!! Yeah!!! She's talking more, and has the old twinkle in her eyes! She laughed at me yesterday when I dropped something, initiated conversation and was enjoying life. She sat at the table and cleaned strawberries for me, and cut them up, putting the "bad" parts in one bowl and the strawberries in the other. Told me to add sugar and a little water. Fun!!!

I appreciate all your concern, and I agree that the right way would be to go through all the correct avenues...but that would be too late for my Mom. I am not trying to give out false hopes...just real hope...not perfection.

Thanks, Felicia

my concern is what happens to your mom after the 6 months are up?

It takes a lonnnng time to find out if a drug therapy is gonna work or not. Waiting is very difficult. The news about this drug broke in January of this year. This is only March.

I tend to be more conservative about treatments because each one is heralded with such hope, but when drugs are rushed to market, we see problems down the line that are even more heartbreaking... I understand the need for haste (wouldn't make any difference in Mom's case - too late for her), but the need for carefully designed double blind testing, good sampling, counterindications, drug interactions, etc. is so very important. It's almost a shame that the news of this hit BEFORE testing could be completed, as it just makes folks even more impatient and some things just cannot be rushed.

felicia I am sorry if I are meeting this news with less enthusiasm than would seem likely. Maybe if I saw it like you have it would be different. Believe me I am very happy that things look good for this treatment. I guess I am just a bit sceptical, about this.

I really hope for the best for you and your Mother and for all of us. Thank you for the update on this endeaver. It is a brave step you are taking.

Hi Bunny's Girl,

Don't worry. Mom and Dad have great insurance, and we have a great family support system. All other medical issues have always been covered. It's just that the Enbrel treatments are not covered by insurance because it's not accepted by the FDA yet for Alzheimer's. That's why were striving for a quick "exception" to the rules. I am their caregiver, and we will have the resources for hospice if and when it's needed.

Thank you for your concern and insight.

Felicia

Um Im a little concerned here Felicia BTW welcome.
What I am most concerned about is what you are saying about your fathers savings.
While I am happy beyond words about the improvements your mom is showing you state 6 months and the money runs out from your fathers savings.
Have you stopped to think about what might happen if either one of your parents need long term care in the end of this journey?
I was just witness to a man getting handed a bill for his wifes care for 1 month it was $16000

Again, thanks for the info, felicia. We will all be monitoring the news for results of double-blind testing and different therapies as this drug makes its way through the approval process for a safe, approved AD treatment.

Oh yeah, and yes that is the article!!!

Felicia

From speaking with other caregivers, there is a decline when they stop the treatments...or even if they wait more than 2 weeks. That is our problem...it is costing us approx $800/wk. We will only be able to keep this up for maybe 6 months before all my Dad's savings are gone. Many people can't afford it at all, especially since it is still only offered here in Los Angeles, CA. It is real though, and we plan on doing everything we can. The first patient that this was tried on has been receiving the injections for three years. I saw him at Dr. Tobinick's office, I couldn't believe HE was the one with Alzheimer's...especially if he's had it for three years. He was very independent, talking to the nurses, he left to go down the hall by himself to use the restroom...absolutely amazing! I just sent an e-mail to Amgen (the company that makes Enbrel) to make them aware of what's going on. Quite a few people are doing this so hopefully Amgen get's our message. This is a copy of my e-mail, I have thrown my name out there for the first time...it's too good to keep it a secret!
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(private email deleted due to privacy concerns for recipient and sender)
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http://www.sciencedaily.com/releases/2008/01/080109091102.htm

Is this the article, Felicia? I remember when this came up before, we wondered what happens to the patient when treatments stop.

Glad to hear that this new treatment has helped your mom. Will be interesting to see how it fares in the months and years to come. I hope the treatment continues to provide great results for your mom. Thanks for the personal update.