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Alzheimer's Drugs are Expensive and Don't Work Very Well for Most People
Myriam
Posted: Tuesday, January 8, 2013 6:56 PM
Joined: 12/6/2011
Posts: 3326


(Source: Washington Post) - Several drugs are approved to treat Alzheimer's, including donepezil (Aricept and its generic cousins) and memantine (Namenda). But they don't work well for most people, according to a report from Consumer Reports Best Buy Drugs. In fact, the report concluded that none of the drugs could be recommended as a Best Buy.


The decision was based in part on a large-scale analysis by the federal Agency for Healthcare Research and Quality. It found that the drugs didn't delay the onset of Alzheimer's or improve or maintain mental function.

 

Besides not being very effective, Alzheimer's medication can cause side effects. While most are relatively minor, such as nausea, vomiting, diarrhea, dizziness, muscle cramps and tremors, they could be debilitating in older people with dementia who can't communicate their discomfort. They're also expensive: An average monthly prescription can range from $177 to more than $400.

 

Go to full story:
http://www.washingtonpost.com


Mimi S.
Posted: Tuesday, January 8, 2013 7:06 PM
Joined: 11/29/2011
Posts: 7029


Well:

That's not what the manufacturers of the drugs claim. I have yet to see any drug company claim a drug will cure or improve memory.

 Although much anecdotal testimony on these boards say the takers have experienced a temporary improvement in cognition.

 

What the drugs do is to lengthen the downhill slope.


Lane Simonian
Posted: Tuesday, January 8, 2013 7:31 PM
Joined: 12/12/2011
Posts: 4845


I always think back to the infamous Aricept commercial that claimed the drug was effective for all stages of Alzheimer's disease.  For once, the FDA showed some spine and forced the makers of Aricept to take it off the air. 

 

Cholinesterase inhibitors such as Aricept, Exelon, and Galantamine do provide symptomatic relief early in Alzheimer's disease because they inhibit enzyme that break down acetylcholine--a compound critical for short-term memory.  However, as the disease progresses acetylcholinesterase activity declines by 85 percent so there is no need to inhibit this enzyme. 

 

All of the drugs currently prescribed for Alzheimer's disease are antioxidants, but the problem is that they are not very good antioxidants.  Antioxidants have out performed prescribed medications in several studies (including ironically one that questioned the use of antioxidants in the treatment of Alzheimer's disease). 

 

The authors failed to point out that E/C/ALA [Vitamin E, Vitamin C, Alpha lipoic acid] treatment reduced the level CSF tau by ~20% and phosphorylated tau (P-tau) by ~9% vs changes in the placebo group by -10.5% and 0.9%, respectively [everyone in the placebo group was on acetylcholinesterase inhibitors]. In addition, CoQ [coenzyme Q] intervention reduced the level CSF Aβ42 peptide by ~8% vs a reduction of 3% in the placebo group. Although these changes were not indicated in Table 2 as statistically significant, they are suggestive of a treatment effect and might have reached statistical significance if the group sizes were larger. At the very least, these results provide a clear rationale for a larger study evaluating the benefits of antioxidant intervention for AD.

 

http://mikemutzel.com/2012/03/21/digging-deeper-on-antioxidants-for-alzheimers-disease/ 

 

And honokiol from magnolia extract does a better job of inhibiting NMDA activation (which causes the death of neurons) than memantine. 

 

In conclusion, the behavioral and neurotoxic effects of intracerebroventricular injection of NMDA were ameliorated by treatment with honokiol alone or combined treatment with either tea polyphenol plus memantine or honokiol plus memantine, but only partly by either tea polyphenol or memantine alone. The therapeutic potential of these neuroprotective regimens in treating excitotoxicity-related diseases merits for further investigation.

 

http://www.ncbi.nlm.nih.gov/pubmed/20695653 

 

The currently prescribed medication do some good, for some people, for some time, but they should not be oversold (either literally or figuratively) and non-drug treatments for Alzheimer's disease need to be taken much more seriously. 


Lane Simonian
Posted: Tuesday, January 8, 2013 7:47 PM
Joined: 12/12/2011
Posts: 4845


This article discusses Souvenaid--a medical drink--and other treatments for Alzheimer's disease. 

 

http://www.telegraph.co.uk/health/elderhealth/9784141/A-glimmer-of-hope-for-dementia-sufferers.html 

 

I am a bit disappointed in Professor Ballard's somewhat negative comments regarding Souvenaid, especially since at one time he was an advocate for alternative treatments for Alzheimer's disease, including aromatherapy. 

 

https://docs.google.com/a/wnc.edu/viewer?a=v&q=cache:qKM8VKywfGsJ:www.hawaii.edu/hivandaids/Aromatherapy%2520as%2520a%2520Treatment%2520for%2520Agitation%2520in%2520Severe%2520Dementia.pdf+&hl=en&gl=us&pid=bl&srcid=ADGEEShflqADjzTzdiKCHnTSoaYI-AXUUETFSgXksiPzQbdraTof2MT0z2hKmqqaAh5bWfenZpZ93e9h3pHpCDm0qDoVO3BEiKrX1ateoYzC0u_96hMMAPhUIvdKRqThhnJ9u5tNcL4O&sig=AHIEtbSrB3bq2trsesJg0umo24ZQ2D3QOA 

 

http://www.ncbi.nlm.nih.gov/pubmed/19488082 


Myriam
Posted: Tuesday, January 8, 2013 11:17 PM
Joined: 12/6/2011
Posts: 3326


Lane, as you know I am very impressed with the research you have done. It is amazing and you are a blessing to us. I hope you take no offense of this question, but if your dear mother was still alive and in stage 3, lets say, what meds, supplements, etc., would you want her to take. Please list.
Lane Simonian
Posted: Wednesday, January 9, 2013 12:15 AM
Joined: 12/12/2011
Posts: 4845


I really wish that I had learned more faster.  I would not only have at least considered using more herbs to treat my mother for Alzheimer's disease, but I would have tried to use herbs much earlier to stop the esophagitis that made it nearly impossible for her to eat and drink.   

 

Sylie discussed the herbs and essential oils she is using to treat Alzheimer's.  The fish oil levels might be too high for some people and the coconut oil does not appear to work when the cause of Alzheimer's disease is genetic, but everything else on the list should be helpful.  Sylie's background in herbs and culinary expertise has really helped her.  I will cut and paste her list from another post. 

 

I take 3000mg's of wild alaskan salmon oil

vinpocetine 

ginko 

ginger

turmeric [piperine in black pepper will increase the absorption of tumeric]

ashwagandha (for mood stabilization)

rosemary 

clove

holy basil

gotu kola

bacopa monnieri 

cat's claw

sage

lemon balm (for muscle complaints, agitation, sleep, cognition)

chamomile (for sleep and mood)

huperzine A

 

 

I also use rosemary essential oil, lavender essential oil (for nervousness and stress), orange essential oil (mood), clove essential oil  in aromatherapy.

 

 

I have switched to an all organic, whole foods diet. Reduced sugar intake. Switched to almond milk over cow's milk,  and of course the coconut oil.

 

 

http://www.alzconnected.org/discussion.aspx?g=posts&t=2147493697 

 

 

Steamed ginseng and magnolia extract may also help, but as I am often reminded there are potential side effects from herbs, so it is always good to check on side effects.  An herbalist with knowledge of Alzheimer's disease might have recommendations for additional herbs, the doses, and potential side effects. 

 

I think the herbs work better than the medicines, but the medicines in conjunction with the herbs may have an additive effect. 

 

On a personal note, I keep this story and picture of my sister and my mother by my computer.  What I try to remember is the joy she brought to life even when afflicted by Alzheimer's disease. 

 

http://www.ballardnewstribune.com/2012/06/26/news/labor-love-homage-mom 

 

 

 


Myriam
Posted: Wednesday, January 9, 2013 3:25 PM
Joined: 12/6/2011
Posts: 3326


OMG!! I live in Ballard. Do you live here, too? Thanks you so much for the list. As you know, I'm already using a lot of what's on the list, but wanted to know what I was missing.
ffwife54@yahoo.com
Posted: Wednesday, January 9, 2013 6:53 PM
Joined: 4/15/2012
Posts: 247


I Have a diagnosis of MCI posssibly due to long term benzo use and  B-12 for which I recieve bi monthly injections and iron infusions as needed, suffer from severe depression and anxiety.

 

To complicate things I also carry the APOE 3/4 gene,

 

I take some of the things on this list but not all, I take the ones I have bolded

 

3000mg's of wild alaskan salmon oil- i take fish oil daily

vinpocetine 

ginko 

ginger

turmeric [piperine in black pepper will increase the absorption of tumeric]

ashwagandha (for mood stabilization)

rosemary 

clove

holy basil

gotu kola

bacopa monnieri 

cat's claw

sage

lemon balm (for muscle complaints, agitation, sleep, cognition)

chamomile (for sleep and mood)

huperzine A

 

I have not heard of the rest but would like to hear more. Also I have been taking 4 tablespoons of coconut oil a day and was disheartened to read that coconut oil is not effective for folks who carry the Az gene.and am interested in why this is.

 

My Dr just put me on Namanda to help wean me off the benzo's but it doenst seem to make any difference other than the cause high anxiety....i would like to use as many natural things as I can.......

 

 


Lane Simonian
Posted: Wednesday, January 9, 2013 7:43 PM
Joined: 12/12/2011
Posts: 4845


Benzodiazepines can certainly cause memory problems.  There is also a big debate as to whether Namenda should be prescribed before the middle stages of Alzheimer's disease.    

 

I will post a study regarding some of the herbs Sylie, Myriam, ffwife, and others are taking and some other ones which I am unfamiliar with. 

 

http://www.ijnpnd.com/article.asp?issn=2231-0738;year=2012;volume=2;issue=2;spage=84;epage=91;aulast=Singhal 

 

Coconut oil acts as an antioxidant but it may also inhibit a protective pathway already inhibited by the APOE4 gene and by presenilin gene mutations.  In any case, coconut oil appears to improve memory to some degree in people without the APOE4 gene but not with the APOE4 gene (I don't think there are any studies regarding coconut oil and early onset Alzheimer's disease). 

 

Myriam, my sister lives about a half mile up from downtown Ballard.  When you mentioned moving to an apartment in Seattle, I thought about the Ballard area.  Maybe we could meet you some time. I live in Reno but I visit my sister in Seattle about twice a year.   

 

 

 


ffwife54@yahoo.com
Posted: Wednesday, January 9, 2013 8:19 PM
Joined: 4/15/2012
Posts: 247


I have not seen or read the debate on Namenda in MCI, What if any of the meds seems to be the bigger debate and cause for confusion among Dr's. In the meantime I'm entering my 3rd year with the MCI diagnosis, each year's testing shows a bit of improvement but no decline.............
Serenoa
Posted: Wednesday, January 9, 2013 10:37 PM
Joined: 4/24/2012
Posts: 484


Thank you for posting Sylie's list of herbs and supplements. It's helpful to me as I am currently creating a regimen for my mom. I plant to use many of these.

 

 

I might mention to anyone interested that I also want to use things that may help to regulate the immune system. As you may know from my previous posts, I believe dysfunction in the immune system leads to chronic inflammation and the oxidative damage that causes AD. One key to the immune system is intestinal flora. I want to promote natural probiotics and I want to restore a natural diversity of gut flora. Here's a few of my ideas:

 

Raw Milk and Yogurt from a local source (natural probiotics, enzymes)

Fermented Foods (probiotics)

Organic Green Leafy Salads (promotes good bacteria)

Organic Fruit and Nuts (promotes good bacteria)

Elimination of refined sugar and processed food (reduces bad bacteria)

Fasting one day a week skipping breakfast and lunch only (induces cellular waste breakdown by the immune system)

 

Organic is not just to avoid toxins, it has been shown that when plants sustain natural environmental damage from insects they react by producing defensive and/or healing compounds, and these may be beneficial to humans.


Lane Simonian
Posted: Thursday, January 10, 2013 12:00 AM
Joined: 12/12/2011
Posts: 4845


ffwife I read about the debate regarding memantine for mild Alzheimer's disease on the Huffington Post (and if it does not work for mild Alzheimer's disease--and that is still a big if--it probably does not affect MCI either).   

 

http://www.huffingtonpost.com/2011/04/12/alzheimers-drug-_n_848039.html 

 

The other big debate is whether Aricept and Exelon should be used after mild Alzheimer's disease.  It is possible that the combination of medicines may show more efficacy than when taken separately, but that view is also controversial.   

 

I am pleased that you are showing some improvement.  Some combination of what you are doing is likely working. 

 

Serenoa, I think you make an excellent point.  I have not figured it out exactly, but the immune system is out of whack in Alzheimer's disease.  Using antibiotic-like compounds while maintaining good bacteria may hold promise.   

 

http://www.worldhealth.net/news/probiotics-help-stress-reduction/ 

 

 

Essential oils are one of the main part of a plant's defense system and essential oils and spices help prevent food from spoiling.  In essence, they prevent or minimize oxidation and they do it for a person's brain just as they do it for food.   

 

http://roberttisserand.com/about/essential-oils/ 

 

http://europepmc.org/abstract/MED/10719616 

 

https://docs.google.com/a/wnc.edu/viewer?a=v&q=cache:GXUZvMR-ndEJ:www.mdpi.com/1420-3049/15/12/9252/pdf+&hl=en&gl=us&pid=bl&srcid=ADGEESgZADz4sd8Ij_JKcN0c7CO6VxaphGP3--_SlkY_VYgKc5Sh_Cy-zwrmDLCunevFY9jXNPmduRlXpZULfTsgo-aOAPvWtkeESypEXfvoT6WxN2Hkf_jwPIAJ7m5y0yr-NueFtGN9&sig=AHIEtbTFLVVzu7T8M8kJVvELvWKxx5i1DQ 

 

For years I have felt like I have been out on a ledge with this disease--a bit edgy; a bit testy; a bit defensive--but for some reason tonight I feel like I am part of the leading edge toward the mainstream of understanding how to treat Alzheimer's disease.

 

 

 

 


scma_2007
Posted: Friday, September 13, 2013 9:10 AM
Joined: 9/13/2013
Posts: 112


My mom was given memantine six months ago, on top of Exelon. Since then she has been having constipation and confusion. Her neuro doctor agreed to ease her out of memantine  a week ago. So far, we observe that her confusion is less, she is much more mentally aware of what she is doing according to our caregivers. We are watching if the constipation would ease out too as the withdrawal of the medication is gradual.

 

Surely, each AD person reacts to meds differently, I can only speak for my mom.

 

Some supplements that helped my parents tremendously in different stages as we have them take:  

-omega-3

-Vitamin D

- turmeric

- B12 methycobalamin

- resveratrol