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Off-label prescription sources to repurpose drugs
Posted: Friday, December 9, 2016 11:14 AM
Joined: 4/10/2014
Posts: 2

Time for my DW is running out, and I need suggestions for off-label prescription sources. Her neurologist and internist won't prescribe and the large nearby university with a dementia research/treatment clinic won't either--they will utilize only "FDA approved drugs for Alzheimer's," of which there is effectively nothing, as you all know. So what is the point of that research/treatment clinic, I ask? Oh, I forget: it's to find preventative blockbuster drugs for their sponsors. Silly me.

Now that I've briefly vented that frustration, I'll return to my query for off-label prescription sources. DW is physically very healthy, 74, two APOE3 alleles, has been tested for all the nutritional and organic simple deficits, no serious behavioral issues, has normal aging brain shrinkage, no vascular insults, etc. The only problem is her memory (problems noted since 6-7 years, diagnosed since 4 years), which is very limited at this point (8-10 MMSE score) and causes all the executive, long-term and short-term recall, processing speed, etc. problems.

She has had a lifelong infection of facial herpes HSV-1, for which she is now medicated--which can cause inflammation of the brain and I believe is the cause of her AD symptoms. Exactly the mechanisms of how this affected her, I have no idea, of course, but based on my reading of the literature, I believe this to be the trigger.

So what am I asking the medical profession to do? Since she is ineligible for basically any clinical trial due to her low MMSE score and at this point needs medication, not a placebo, and would die long before any new drug became available anyway, her only hope for any level of remediation is off-label prescription for repurposed drugs which: have been FDA approved, are safe, have been prescribed for a decade or more for other diseases, and have been found through research to have effects related to AD development. As a bonus, many of these drugs are currently under study in clinical trials or being prepared for such. Four examples I am interested in are: riluzole, salsalate, mefenamic acid, and acitretin. There are many more, I am sure, that can be utilized and would be interested in finding out more about them.

The question must be asked, why not join any trials? None that I know of are reasonably close. DW wouldn't meet the MMSE requirement. DW hasn't time to get a placebo. DW needs action now, and that means a prescription with followup watching for negative and positive effects. In effect, she will be her own experimental case study. Given the death sentence she otherwise has, what does she have to lose?

In fact, I would ask the same for the other millions of AD patients out there who are in the same situation. How can they morally be abandoned, just because they don't qualify for parameters of the current trend in clinical research? Can't we have remediation research going at the same time as preventative research? Surely a big data resource can be developed which includes data from all the individual off-label case studies and then share this worldwide to provide a resource for potentially helping the millions who are now suffering from AD--and not just those who might get it? Imagine the uproar if cancer patients were told that because they have the disease they aren't eligible for a potentially usable drug because it had to go through an approval process taking a minimum of 7-9 years?

So, anyone out there have suggestions, hopefully based on experience, for sources of off-label prescription? 

Mimi S.
Posted: Friday, December 9, 2016 2:07 PM
Joined: 11/29/2011
Posts: 7027

Several of us on these boards believe that Best Practices has kept us longer in Early Stage:

There are other things you can do to help slow down the course of this disease, including:

(1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See:

Basically, it involves:

- High intake of vegetables, legumes, fruits, and cereals

- High intake of unsaturated fatty acids (mostly in the form of olive oil)

- Low intake of saturated fatty acids

- Moderately high intake of fish

- Low-to-moderate intake of dairy products (mostly cheese or yogurt)

- Low intake of meat and poultry

- A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal.

To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they're very good for you. 

Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I've seen plenty of products that contain olive and canola oils.)

Avoid hydrogenated fats and trans fats like the plague.

(I also take Omega 3 and antioxidants.)

(2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset. (As strenuous as possible. Recent research shows such build new brain cells!)

(3) Lots of exercise for the brain -- activities that involve learning something new. I've seen some reports that learning new things coupled with using a computer can be particularly helpful.  (A variety is best. Figure out what stretches your mind but is not so hard you are frustrated.)

(4) Socialization, doing things with friends and family. (Most of us do not do well in large and/or noisy groups.)

(5) Plenty of rest. 

(6) NO SMOKING!!! and avoid air pollution as much as possible.

(7) Do whatever you can do to minimize stress.

(And take meds as directed.)

Posted: Friday, December 9, 2016 6:26 PM
Joined: 4/10/2014
Posts: 2

Thanks for the come-back and suggestions. I too firmly believe in the Best Practices approach; a healthy body is necessary for a healthy mind, and this is something DW and I have long sought to achieve. After my having a stroke (recovered completely) over 25 years ago, we cinched down even more tightly on our diet. Consequently, we adhere pretty closely to the Med Diet (DW never could physically tolerate any alcohol, however). She is also on numerous anti-oxidants and anti-inflammatory nutritional supplements.

Both of us are retired school teachers which kept us active daily. She had over 300 music students daily in all types of instruments and voices, plus after school activities. And she loved it all. I think her neuropsycologist who tested her was correct in assessing that it was this that gave her a "cognitive reserve" to enable her to have resisted AD as well as she has, plus the healthy life-style. Vacations also meant bicycling, hiking, scuba diving, etc. She continues to be very active physically outdoors and indoors and does like to socialize, but enjoys her time for her quiet activities and with me. Our local senior center will be starting an active day care schedule which I believe will give her opportunities for more social and mental stimulation than I can provide right now, after 53 years of marriage.

Again, I do appreciate the thoughtful reminder and checklist to make sure I am doing all I can on that front.

Posted: Saturday, December 10, 2016 12:27 PM
Joined: 2/26/2016
Posts: 292

I just read your post and wanted to post right away. I suggest you try the generic asthma drug montelukast (brand name Singulair). It is very safe, easy to get, cheap , and, in my opinion, effective. I was suffering from extreme mental fatigue interfering with my focusing on mental tasks. I started taking it 11 months ago. After less than one week, the mental fatigue went away.

I am 68, a retired American living in Ghana.  I haven't been officially diagnosed with Alzheimer's but before taking the drug, a doctor gave me a complete physical and dozens of lab tests and all came out normal. The doctor said I have a brain disorder, probably age related, possibly early stage dementia. Now after taking the drug, I feel completely normal again.

Montelukast has been around for more than 15 years and tens of millions of people around the world, a large portion of them children, have taken it for preventing asthma attacks and for related illnesses.

You can go to any doctor and tell him or her that you have been taking this medication and need a prescription. It is such a common drug, and also asthma diagnoses are mostly based on self reporting and not lab tests.

Montelukast works by blocking inflammatory substances from entering cells in the brain. Read my posts on montelukast in the clinical trials section. I have about 6 posts since April this year, including one about the leaky brain. Let us know how your wife is doing and about what you have decided. Best of luck. Larry

Posted: Sunday, December 11, 2016 3:59 PM
Joined: 9/11/2013
Posts: 1085


My DH was in a clinical trial (Noble study) and saw some promising improvement in  cognition. After 6 months  his vision deteriorated, he became more confused and developed tremors. After discussing with his neurologist, we withdrew from the trial. He had since been dx'd with Parkinsons disease. One of the neurologists said that since this was a double blind study  the effects of the drug (we surmised he was getting drug as he experienced side effects) may have played a part in his cognitive decline. We won't know for a few years as this trial is in phase 2.

I would go the singulair route if possible.  My sister has taken it for several years for nasal polyps which has helped slow down growth.


Posted: Monday, December 12, 2016 7:55 AM
Joined: 4/24/2012
Posts: 484

Igpacker, I have experienced your dilema in finding a doctor who would prescribe off-label. After much seraching and advice from friends I was able to find the doctors out there who believe in alternative therapies, but was also able to avoid the snake oil salesmen. I was able to get my mother an off-label drug, but it was not easy. There are some things to look for on a doctor's website that will indicate they are open to alternative therapies. The first would be if the doctor uses "chelation therapy" in their practice. Although most doctors would recomend this for extreme situations like heavy metal toxicity, they consider it quackary for other purposes. Here is a good example:


This is an excerpt from a write up I did to document the effects of my mother's off-label drug treatments:


"My mother’s first doctor was kind enough to quickly look over the evidence I presented to her, then said she really didn’t know who could help and mentioned several allergy specialists that I could try. None of these wanted to see us. We found another doctor who I thought might be more open to unorthodox treatments. She was very good and agreed that the evidence for Leukine had merit. But, she said “we don’t do that here” and recommended a leading AD specialist who was working with cutting edge new treatments. The initial consult for this doctor was $800 and they didn’t take insurance, so I had to ask up front if they would be willing to try immune system therapy for AD. The answer was no. Mom saved $800. I spoke with several Oncologist’s offices (since they were the ones who actually used Leukine), and they seemed perplexed that I wanted them to treat an AD patient. I spoke to several Neurologist’s offices who were also quite puzzled about my request. I spoke to a pharmacy representative friend who spoke with the AD doctors he worked with. No one was interested, no one could help. In the end I think we got extremely lucky in that I had a good friend in the medical industry who put me in touch with a doctor who was willing to review the evidence and give this treatment a try."