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has anyone tried the Bexarotine?
lesa
Posted: Tuesday, February 21, 2012 7:52 PM
Joined: 1/24/2012
Posts: 69


Please let us all know if anyone has managed to get their hands on this drug and given it to their loved one.
Still Waters
Posted: Wednesday, February 22, 2012 1:34 PM
Joined: 2/6/2012
Posts: 1092


Good thread. Hopefully we will get some feedback. Answers. Because the medical community is obviously dragging their feet.
hmp100
Posted: Thursday, February 23, 2012 10:00 PM
Joined: 1/24/2012
Posts: 16


I am looking into obtaining it.

 

 

My LO has three doctors in his family and one about to marry into the family.  None are willing to prescribe it as they are not oncologists, and writing the prescription would raise a flag.

 

 

They also warn me that blood dyscrasias and bone marrow suppression are risks that must be taken into account (although they are not on most lists of side-effects I have seen).

 

 

I have thought about trying to get the drug from Canada, but a prescription is required there, too, by reputable sources.

 

 

New urgency was added to my quest today, as my LO went for an opthamologic exam which indicated his optic nerves are becoming pale and grayish, a sign of advancing atrophy.  Shortly after he was diagnosed with posterior cortical atrophy in August 2009 a similar eye exam showed pink and apparently healthy optic nerves.

 

 

The doctor suggested it was time for another MRI, as his last one was in May 2009.  But I wonder what the point would be.  No matter what they find, there's not a damned thing that anyone can do . . . and I just don't know if I can bear to hear the likely results delivered.

 

 

Even though there are some new drugs in the testing pipeline, I now realize that there is NOTHING far enough along to be of any use to him should it eventually be approved.

 

 

The only hope left for him is to take the risks attendant upon trying something that is not fully tested or approved.


Still Waters
Posted: Tuesday, March 13, 2012 7:33 PM
Joined: 2/6/2012
Posts: 1092


They should begin testing this medicine in humans immediately. I get tired of hearing about potential cures/treatments that look very promising and should be available for human use in 10 years. Why should it take so long to get medicine from the laboratory to the patient. Something needs to be done so the FDA can substantially reduce the amount it takes to get a medicine approved. There are over 5 million people in the U.S. alone presently with alzheimers. My mother is one of them. Every day we hope that an effective treatment will be found before our loved one's memory is completely gone.
Myriam
Posted: Wednesday, March 14, 2012 1:40 AM
Joined: 12/6/2011
Posts: 3326


Very frustrating! Unfortunately, it's about the money. Funding for AD research is tiny right now, though it's beginning to increase. 
Still Waters
Posted: Saturday, March 24, 2012 12:16 PM
Joined: 2/6/2012
Posts: 1092


i contacted the university that conducted the bex study in mice and they are not going to do human trials on ALZ patients until at least the fall. they are conducting trials on normal humans next week or next month. the excuse is, they have to follow protocol. if you ask me, this type of study should be the exception to the rule, because it has already been approved by the FDA. i am pretty pissed off. and i let them know it. 

 

has anyone tried bex yet? its hard for me to believe no-one has tried it. someone out there must have by now.....


hmp100
Posted: Saturday, March 24, 2012 3:26 PM
Joined: 1/24/2012
Posts: 16


I have tried to get Bexarotine every way I can, but to no avail.  I have concluded that no doctor is going to prescribe it for off-label use with an Alzheimer's patient.

 

 

My LO's younger brother is a geriatrician, and two of his nieces are doctors (one in family practice and one a pediatrician).  But all three said that, since they are not oncologists, prescribing it would raise a flag and jeopardize their licenses.

 

 

Next I called a dermatologist who gave him a skin cancer screening a couple of months back.  The dermatologist knew the drug well and said that for off-label use with Alzheimer's it could only be prescribed either by an oncologist or a neurologist, again because of concerns about raising flags.  However, he was very sympathetic to my efforts and offered to email two neurologists in his group practice to see if they would prescribe. He was almost certain one would not but hoped the other, who is a bit more adventurous, might.

 

 

He went over all the possible side effects with me and said that most are rare.  However, he said there are two side effects that invariably manifest and that require monitoring by a physician.  The first is elevated triglycerides, which need to be combatted with statins or other medications.  (My LO already has ski-high triglycerides, probably because of the high doses of MCT oil he takes daily, and is already on Lipitor, Fenofibrate, and Niaspan.)  The second is suppressed thyroid activity, which needs to be combatted with synthetic hormones.

 

 

A couple of days later he called back to tell me that both the neurologists had declined even to discuss with me prescribing it off label.

 

 

He really was trying to be very helpful, but he warned me strongly against attempts to obtain the Bexarotine from Canada or someplace else to administer myself, due to the need to manage the two above side effects.

 

 

So . . . for the time being, I've given up.


lesa
Posted: Saturday, March 24, 2012 5:03 PM
Joined: 1/24/2012
Posts: 69


Hey Hmp100 you have certainly given it your all to get this drug.  I have not had luck with our doctor friends either.  My husband is in hospice now and declining daily.  We have absolutely nothing to lose by taking this drug but like you nobody seems to see that.  I just feel that there is someone out there that has taken Bexarotine for Alzheimers.  I could not find a Canadian place that would send it without a prescription.
Billy Boy
Posted: Monday, April 16, 2012 7:44 PM
Joined: 4/16/2012
Posts: 5


DR. Jay Rowan talked about Bexarotene in the April edition of his Second Opinion newsletter. Has anyone else seen it? I thought it interesting.
husker
Posted: Monday, April 23, 2012 1:26 PM
Joined: 4/18/2012
Posts: 2


has anyone tried anything that has helped with their bad behavior,besides namenda and aricept.spouse 77 diagnosed with vascular dementia 2010.not a very good beside manner.on namenda 9 months,helps some but not enough.keep hearing about saraquill at the daycare he goes to twice a month.anyone ever tried it.nancy.

 


elvisgirl01
Posted: Tuesday, May 15, 2012 6:33 AM
Joined: 5/7/2012
Posts: 97


Is there someplace to put your name on a waiting list for this, or a website to go to where this drug can be monitored?
Lane Simonian
Posted: Tuesday, May 15, 2012 4:00 PM
Joined: 12/12/2011
Posts: 4837


See James's post on the off label use of bexarotene for Alzheimer's disease. 
jamesb
Posted: Wednesday, May 16, 2012 11:49 AM
Joined: 5/12/2012
Posts: 3


follow this link...

https://www.inspire.com/groups/alzheimers-foundation-of-america/discussion/skin-cancer-drug-bexarotene-cured-mice-of-ad/?page=1#replieshttp://


serena
Posted: Sunday, May 20, 2012 8:40 PM
Joined: 5/19/2012
Posts: 68


Husker,

My dad is taking both those meds, Was just recently put on the namenada. Although I dont think he was taken the aricpet or any of his other meds till I started setting them up for him shortly have to moving in to help him out. After a few weeks I am not having issues and he is refusing to take his meds. Because he says they make him feel funny and his leg weak. Just asking if your spouse has had any of this side effects? It could be cause by anyone of them. I am calling his doc tomorrow to see if he can see him and try and figure it out!!!


Lane Simonian
Posted: Tuesday, May 22, 2012 4:57 PM
Joined: 12/12/2011
Posts: 4837


I have just posted on the aromatherapy thread (May 22nd) a comparison of the chemical structure of bexarotene with that of compounds contained in various essential oils (such as eugenol, carvacrol, and thymol).  The initial effects reported for the use of each is quite similar (which is not surprising since their chemical structures are quite similar).  You can search for threads on the Spouse or Partner Caregiver forum or the Caregiver forum for initial results using aromatherapy to treat Alzheimer's disease and you can compare them with the results that James has posted for bexarotene.  Several essential oils used via aromatherapy are cheaper, generally safer, easier to get a hold of, and perhaps as effective as bexarotene. 
Lane Simonian
Posted: Sunday, May 27, 2012 12:27 PM
Joined: 12/12/2011
Posts: 4837


I thought it might be helpful to compare here bexarotene with three compounds (eugenol, thymol, and carvacrol) found in some essential oils (bay laurel, clove, basil, rosemary, cinnamon leaf, for instance), all of which are likely to treat Alzheimer's disease effectively. 

 

http://www.ingentaconnect.com/content/ben/cbc/2006/00000002/00000001/art00005 

 

http://journals.lww.com/behaviouralpharm/Abstract/2012/06000/Cognitive_enhancing_activity_of_thymol_and.3.aspx 

 

 

Eugenol 

 

 

 

 

 

Thymol 

 

 

 

Carvacrol 

 

 

 

 

 Bexarotene 

 

 

 

Bexarotene has a few more methyl groups (CH3 or H3C), which may not make much difference.  Otherwise bexarotene, eugenol, thymol, and carvacrol are very similar compounds.  The advantage again is that the compounds in essential oils directly reach the brain through aromatherapy and because they do so they have fewer side effects on the rest of the body.