Bexarotene clinical trials
Do you know if human clinical trials have begun on this drug (Bexarotene) for Alzheimer's? If it hasn't how do I find out when it would start and if my wife could participate? She is in the mild to moderate phase. Thanks
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EmailAn article in the Huffington Post indicates that trials may begin soon:
http://www.huffingtonpost.com/2012/02/09/bexarotene-alzheimers-mice-skin-cancer-drug_n_1266430.html
The following is the opening paragraph regarding the clinical trials from Case Western University:
Thank you for your interest in our work, we are touched you have reached out to the Alzheimer’s Research Laboratory. We are excited about our findings, and are hopeful that the work we have done in mice will translate to an effective treatment for those with Alzheimer's disease. It is very early in the process, and while we are not currently enrolling patients in clinical trials, it is probable that any subsequent clinical trial will be carried out through NIH-sponsored Alzheimer's Disease Research Centers. For those interested in clinical research today, our recommendation is to connect with the Alzheimer's Association website, as they have a program in place for connecting people with clinical trials. Here is the link:
http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp
Hi,
The news on Bexarotene is very encouraging. The findings in the new study are dramatic. You can read more about this and see two videos on our article at: FDA-Approved Bexarotene Improves Memory, Reversing Alzheimer's in Mice.
Many clinical studies have been done successfully on mice. From what I can gather, clinical trials for the use of bexarotene in humans are still being discussed. However, there may be a more immediate approach.
Bexarotene also enhanced the capabilities of microglia cells. Microglia cells are the main form of active immune defense in the central nervous system (CNS). They destroy beta-amyloid. In the bexarotene studies, the microglia of the mice were stuffed with beta-amyloid.
There are currently human clinical trials being conducted at the University of South Florida on a protein called GM-CSF, which also stimulates microglia production. The study is called: Study of the Safety & Efficacy of GM-CSF (Leukine) in the Treatment of Alzheimer's Disease and it is currenlty recruiting participants. You can get information about the trial and who to contact in the following article:
Leukine Rushed to Clinical Trials.
Let us know if you join and how it goes,
Dina
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"The researchers who did the study are going to be starting a human safety trial with 12 patients at the end of this month or early next month. That will run for four months. So in terms of getting some small, early safety data in humans for the purpose of treating Alzheimer's, that could be fairly soon."
Here's a description of the known side effects of Bexarotene (brand name Targretin) when used for its currently approved treatment of skin cancer:
Thanks Jon for this encouraging link.
Dina
Hello,
I'm very happy to learn that indeed that a research progress has been revealed on this epidemic disease in this country!
My dad has this disease since 2007 and would like to have him participate on this trial,
Can you please send me any information on the clinical trials
sincerely,
FS
Hi Shkrelif,
If you read Jon's post and that of Nurse Dina's above, you will find links to more information about the clinical trials.
If you have trouble getting to the links, let me know.
Dina
My wife was diagnosed with early on-set Alzheimer's almost 5 years ago at age 46. She is very strong and healthy, was a theater performer for years. How do I find out if she could qualify for this trial. She is a rare case and I think she would represent someone different as most people afflicted with this terrible disease are much older.
Thank you - Harry
Hi Harry,
My husband has been struggling with Early Onset Alzheimer's for 12 years; he is 64 years of age. He seems to be holding his own for quite a long time.
Therefore wondering if there are any Clinical Trials going on as yet for the drug (Bexaratene that promising for Alzheimer's treatment
Hi Juneal,
Glad to hear that your husband is stable. At the same time, I can certainly appreciate your interest in clinical trials for Bexarotene. Many people are waiting for information. As soon as we know something about clinical trials opening, we will post to the site, but you too can keep watch.
At the top of this page, there is a green tab called TOOLS. If you hover over it, you will see a drop down menu which contains a number of items including CLINICAL TRIALS. If you click on that, a screen will come up which will allow you to search. If you search for Bexarotene and Alzheimer's and if there are studies, it will provide you with a list.
I checked today and there are no current clinical trials. If you click on this link, you can see the result of my search for clinical trials for Bexarotene and Alzheimer's. (There are clinical trials listed for Bexarotene as it is a drug used for other conditions. That is why it is important to specify Bexarotene and Alzheimer's).
Hope this helps,
Dina
I am a 62 year old male who has recently been diagnosed with alzheimers. I am interested in taking part in clinical trials with bexarotene. Please let me know how I can apply.
Patrick
Welcome Patrick,
I just checked the clinical trial data base and as far as I can tell, they have not announced any current clincal trials for the use of Bexarotene with Alzheimer's. As soon as we hear about the beginning of a clinical trial, we will announce it.
You mention that you have been recently diagnosed with Alzheimer's and I wanted to talk about hope, hope which you will find in the articles on this site.
This site is chock full of inspiring articles about people with Alzheimer's. In the words of Jay Smith, a writer with Early Onset, "There's still a lot of good living to do!"
Here are just a few. Perhaps the most famous person in the arena is Dr. Richard Taylor, who was diagnosed about ten years ago and is still writing and speaking passionately about the need for more therapies and assistance. He knows how much people can do after a diagnosis with just a little help from people who care about them, and how much more with the right therapies. Hear what he has to say - read one of his many articles on this site by clicking here on the article Emphasize Real People Over Hit-and-Miss Research.
Jim Mueller, diagnosed with Alzheimer's at 36, is helping get the word out, because getting people treated early is effective in helping to offset the symptoms of the disease. Click here to hear him Publicizing His Cautionary Tale. To go full circle, don't miss the reporting on the remarkable conference of people living with Alzheimer's covered in, There's Still" a Lot of Good Living to Do."
I hope you find these and other articles on our site inspiring. To find more inspiring articles, go to the top of this page and select the green tab LIBRARY-->INSPIRATION.
Keep writing in and reach out for information and support as needed. Hope to hear from you again soon,
Dina
I just found this site, thanks to a very good friend that sent me the article on bexarotene.
My mom and I are very interested in the start of clinical trials. My dad has mild to moderate alzheimers and he just went to his neurologist last week. He hasn't declined much since his last visit and we would go anywhere to get him in the trial.
He is my stepfather, but he has never made us feel that way. He polishes walking sticks and rocks that he thinks are pretty. He forgets what hes doing from one minute to the next sometimes. He goes to get the mail out of the box and ends up finding rocks or a walking stick to work on. He will go back for the mail several times before he actually remembers what he was doing.
We love him so much and don't want to see him get any worse.
I will keep checking for updates and thank you for all the info on your site.
Jackie
Hi Jackie,
Welcome. Your dad is very lucky to have such a devoted family that would take him anywhere to participate in a clinical trial.
As I mentioned in my post above, we will keep you posted about any Bexarotene clinical trials we hear of. In the meanwhile, you might be interested in checking out other clinical trials that are recruiting subjects. Click here to go to the Listing of Clinical Trials.
In addition, you might be interested to read more about the use of coconut oil, MCT oil and Axona. There are many articles and a number of threads on the site discussing the pros and cons.
Below is a copy of a list of some of the articles, threads and references on our site about the subject. Click on any of the underlined titles to jump to that reference. I hope this is helpful,
Dina
From the top of any page, select:
LIBRARY ->
MEDICATIONS & SUPPLEMENTS ->
AXONA, COCONUT OIL & KETOGENICS
In addition, there is now a blog on this site consisting of a growing collection of testimonials and such by people using coconut oil, Axona or other rich sources of MCTs. Check it out here:
Coconut Oil & Alzheimer's Blog
A thumbs-up to everyone who is participating 
, both for opening up the subject afresh, as well as articulately presenting the difficult conflicts involved.
Here's an updated listing of some videos & articles you will find on this site:
Coconut Oil & Alzheimer's
- Dr. Mary Newport on her Research on Treating Alzheimer's with Coconut Oil
- Coconut Oil Ketones Increase Blood Circulation to Brain
- Why Aren't Doctors Recommending Coconut Oil?
Alzheimer's Diet Details
- How much daily coconut oil helps Alzheimer's?
- Isn't Coconut Oil Fattening ?
- Coconut Oil's Fat Dangers vs. Brain Benefits
- Is desiccated coconut any good for dementia?
Coconut Oil Testimonials
- Bruce is overcoming dementia with the help of God and coconut oil.
- Alzheimer's & Coconut Oil: One Couple's Testimonial
- NIH's Dr. Veech on Post-Coconut-Oil Clock Test for Dementia
- Research Demonstrating Benefits of Coconut Oil on Steve's Alzheimer's
- Testimonials for Coconut Oil as a Dementia Therapy
- What’s Bad About Using Coconut Oil for Dementia?
Ketogenics: The Science Behind Coconut Oil for Alzheimer's
- The Keto-Dementia Diet
- Keto-Dementia Diet Books
- Is the Ketodementia Diet Effective for Diabetics?
- Keto therapy
- Dietary Ketosis Study Results
The Ketogenic Diet for Dementia
- Ketogenic Diet Improves Dementia in Mice
- Mom has dementia: Is the Ketogenic Diet dangerous?
- The Ketogenic Diet's Side-Effects
Moving Up from Coconut Oil
- Axona, MCT & Coconut Oil: Differences & Benefits
- If Axona’s a Volvo, Coconut Oil is an Ol’ Chevy
- Is lower cost Coconut Oil as effective as higher priced Axona?
- Ketone Esters Treat Alzheimer's 10 Times Better Than Coconut Oil
- Axona's expensive. Anyone experience results, alternatives or just stopping it?
- Benefits Observed After Using MCT/ Coconut Oil for Alzheimer's
Axona: The FDA's Medical Food Version of Coconut Oil
My wife has early stage of Alzheimer. Is bexarotene used any other country and are there any trials outside U.S. I have not seen this product given the publicity outside the medical field that could help ie Dr. OZ and others. I guess my hope is that this product is a possible help/cure for Alzheimers. What can we as caregivers do to help move the product forward? I know they are other trials going on but this product sounds as if it holds the most promise.
Just wondering what it would cost to get it off label if I could get a prescription for it.
Perry
Hi Perry,
To understand how drugs such as Bexarotene are priced, you need to understand the drug pricing system, called a formulary. Drugs are grouped into tiers. The more the drug costs the payer, the higher the tier, and the more it will cost us buyers.
To learn more about the formulary and pricing of drugs you can click here to go to AARP's website which explains the tier system.
I did a little exploring and found that Bexarotene or Targretin is a tier 5 drug, this means it is very expensive. My search found that to purchase thirty, 75mg capsules you would pay $1,156.64. We do not as yet know what the recommended dosage would be for the treatment of Alzheimer's. How many capsules would be needed each day? Each insured individual must check with their insurance carrier to see if they are covered for off-label use of medications.
Dr. Gary Landreth, Professor of Neurosciences, Alzheimer Research Laboratory Case Western Reserve University, School of Medicine, said not to try using this drug for Alzheimer's.
Whatever you wish to do, make sure to discuss this issue with your treating physician.
Hope this helps,
Dina
Hello Dina,
I am one of the youngest of two sets of twins in the same family. Our mother had Alzheimers and passed on in 1998. The older set of fraternal twins have both been diagnosed with Alzheimers within the past two years. They are healthy 72 yr. olds. We, the younger twins are identical and 14 yrs. younger than our sisters. We also have a brother that is 4 yrs. older than us.
We are wondering if and when clinical trials occur for Bexarolene our sisters would be good candidates and we the youngers will be willing to participate in some way?
Thanks, cc
My Mother is 68 years old. She has onset alzheimers now for 8years Her Doctor says she is between stages 6&7 Our Family is willing to take the risk for this Trial. At this point My Mom would want this. She is still walking w/ assistance and can recognize her close family. If we can't get her in a trial. Is there a way to get this drug. How would I get it without a script? Yes I'm desperate.
Hi Calamityc and PHelpMomlease,
Everyone is eagerly awaiting some news on clinical trials for Bexarotene. I wish I could say that the required process of testing will proceed quickly and that we will see clinical trials recruiting subjects.
At the moment, we are all eagerly waiting progress. One of the ways in which I check to see if something new is in the pipeline is by going to a site called clinicaltrials.gov You too can check in to see if something new is posted.
Another option might be to contact Eisai, the manufacturer of Bexarotene (Targretin) to see if they are collecting data on the use of Bexarotene for Alzheimers.
If you are interested in obtaining the drug for off label use, you must find a physician willing to prescribe it and monitor your loved ones' response to the drug.
I hope this helps,
Dina
What dosage would one take to try Targretin?
Hi Easterka,
Since the drug has not been approved as yet to treat Alzheimer's, there is no recommended dosage. If you are considering off label use, you must discuss this with your prescribing physician.
Let us know what you decide,
Dina
Here is a message from Dr. Landreth of Landreth Labs at Case Western Reserve about clinical trials and off label use:
Requests for Clinical Trials
We have received hundreds of emails and phone calls about clinical trials. We are sorry that we are unable to respond individually to each query.
A phase I proof of mechanism trial will start soon to test the effect of the drug in the brains of normal subjects. We are not accepting additional subjects for this trial
We are currently determining how best to administer the drug and resolve several scientific issues. These studies will take some time and we are working as fast as our resources allow. These studies must be completed before we can design a Phase II trial. We do not know when we can begin these latter trials.
We STRONGLY DISCOURAGE any off label usage of bexarotene. There are potential serious adverse effects in individuals with diagnosed Alzheimer's disease.
This is all the information that is currently available. Any new developments will be posted here.
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yes I would like to ask the same question as to clinical trials with Bexarotene for Alzheimers? my husband is a healthy 76 and has mild to moderate dementia/alzheimers....he was involved in a clinical trail in tampa at Stedhams Clinic sponsered by Elan and was tested for the alzheimers gene and he did have it....thanks