I admit, I am tempted to buy Bexarotene off-label for my mother, Dotty. What is the risk? She is almost 96 years old, and in an advanced stage of Alzheimer's. On the other hand, I must ask myself, what are the consequences if I harm or kill her? Those consequences aside, would I be able to live with myself if I harmed her?
By Bob DeMarco
+Alzheimer's Reading Room
Lets start with the full disclosure. I am not a doctor or a scientist. The opinions stated here are my own, and based on information that is currently available to me.
This week the Alzheimer's community is buzzing about a new research study published in Science Express that indicates amyloid plaque (Abeta) was removed from Alzheimer's infected mice in a few hours by an already existing, FDA approved drug, Bexarotene.
The immediate question, can you buy the drug off label? The simple answer is yes. All you need is a doctor that is willing to write the prescription.
I already know from the emails I am receiving, and from the responses of scientists, doctors, and neurologists, that people are asking for the drug.
Bexarotene is expensive and cost almost $1200.00 for 30, 75 mg capsules.
Do I think that some members of the Alzheimer's community will try this medication, off label, for the treatment of Alzheimer's? My experience tells me that the answer is, Yes.
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I am now remembering a frenzy that was started in the 1990s when Shark's tooth (cartilage) was being promoted as a cure for cancer. At that time, one of the brightest, most highly educated, man I ever knew decided to spend $300 a month to get the Shark powder for his wife.
His logic seemed sound to me. His wife was terminally ill with cancer, and what was the risk? Probably not much.
Of course, this man was hoping beyond hope that shark cartilage would turn out to be a magical cure for his wife. Sadly, it didn't happen.
Now I can easily envision well educated, bright people thinking they will give Bexarotene a try. After all, Bexarotene is already approved by the FDA for humans, and the profile of side effects looks decent.
So why not?
Please read these quotes that appeared in the article, A Sudden Flash of Genius Rudy Tanzi, carefully,
Amyloid-beta protein (Abeta) -- the primary constituent of the plaques found in the brains of Alzheimer’s patients -- may be a normal part of the innate immune system.
“It means you don’t want to hit Abeta with a sledgehammer,” Dr. Tanzi said. “It says what we need is the equivalent of a statin for the brain so you can dial it down but not turn it off.”
My point. What if you gave Bexarotene to a person suffering from Alzheimer's and it erased too much plaque?
Some of you might be familiar with the cleaning product known as the Magic Eraser. The Magic Eraser removes stains like magic. When I say remove, I mean gone.
So herein lies a real risk if you decide to give Bexarotene to a real live person. You might destroy their brain, or maybe kill them. Now, since humans are already taking the drug to treat cutaneous T-cell lymphoma (a type of skin cancer) those risks might not be high. But, how can we know?
No one knows right now if Bexarotene will work in humans for the treatment of Alzheimer's disease. We don't know anything about dosage, frequency, or for how long a person might take the drug for the treatment of Alzheimer's.
There is some good news. A trial of 12 people will start shortly to begin to answer some of these questions.
Here is what Dr. Gary Landreth, Professor of Neurosciences, Alzheimer Research Laboratory Case Western Reserve University, School of Medicine, said,
"Don't try this at home because we don't know what dose to give, we don't know how frequently to give it, and there are a few nuances to its administration. So one shouldn't be prescribing it off-label."
I will admit, I am tempted to buy Bexarotene off-label for my mother, Dotty. I mean what is the risk? She is almost 96 years old, and in an advanced stage of Alzheimer's. On the other hand, I must ask myself, what are the consequences if I harm or kill her? Those consequences aside, would I be able to live with myself if I harmed her?
My conclusion. Not for us at this time. Nevertheless, I continue to think about it. I bet you are too.
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- How Much Does Bexarotene Cost, Will Alzheimer's Patients Buy it Off Label?
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- Is Alzheimer's World an Irrational Place?
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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized Influencer, speaker, and expert in the Alzheimer's and Dementia Community Worldwide. The Alzheimer's Reading Knowledge Base contains more than 4,000 articles, and the ARR has more than 343,000 links on the Internet. Bob lives in Delray Beach, FL.To learn more about Alzheimer's and dementia visit the Alzheimer's Reading Room