My DH started on Aricept about 6 months ago and started on Namenda about 8 weeks ago. We also started him on coconut oil (1 tsp in AM and PM). He seems to be better (can count backward on serial 7s to 5 levels when he could only get to 1 level 2 months ago), and he remembers things better (he remembered my son likes to play 9 ball instead of 8 ball in pool the other day). He hasn't had any negative affects from the medicine. I am, frankly, surprised to see him improve so much. His improvement did not seem very significant for the first month and has only really become notable in the last couple of weeks. I read that the combination's effectiveness does not plateau until 12 weeks so I am optimistic that he may yet improve a bit more.

All that being said, I am trying to keep my expectations in line with reality and don't want to set myself up for a major disappointment. Does anyone know how long the combination is supposed to help? I understand that AD is a decline over time and that the combination is supposed to slow the progress down, but I can't find anything to help me adjust my expectations.

Any info would be appreciated very much!

God Bless You ALL!

Sharan, my husband improved quite a bit when first put on Namenda. If I recall correctly, something like 25% of patients improve when put on either namenda or a cholinesterase inhibitor (but don't quote me on that statistic.) My husband's neuro didn't think the cholinesterase inhibitors do any good, so he wasn't on any of those until he was accepted into the huperzine A trial roughly six months later, and at that time, he was still markedly better than when first diagnosed. BUT, part of that could have been due to having gotten rid of some sources of serious stress -- his symptoms are VERY sensitive to stress.

Each med has been shown to be effective for several years BUT that means that patients taking the med did not decline as much, ON AVERAGE, as patients who did not take it. Some patients slide a lot faster than others, even if they're taking one or both type of meds. The combination is supposed to be better than either med by itself. I don't think I've seen anything on how long the combination may be effective, but one would assume the combination would "work" as long as each individual med would.

My DH is on Aricept since he was diagnosed two years ago. He declined at a rapid rate and is now in stage seven, if you go by stages. His doctor added the Namenda in March of this year and it has helped him a great deal. I was told by his doctor to enjoy the improvement while it lasts. He gave it about two or three years to work, but he also said that it is different in every patient. So I take it one day at a time and thank God that it has helped so far.

I was reading on the Alz.Org site and discovered that some people were on the combination of Aricept and Namenda for years. They, too, were not sure how much it seemed to "improve," but they did note that the medicine seemed to slow down the progress. It is helpful to see that some of you note that you actually saw improvement at first. These symptoms, their improvements and reversals, are so confusing and misleading. I honestly believe that the hardest part of this disease is the complete lack of predictability, the lack of control over what would seem to be fairly simple question to answer (what is the expected course of the disease?), and the variability in "interactivity," "activity," memory, participation, and "being here" all combined in one package called AD/dementia sometimes makes me question my sanity. I find myself asking myself: Is he really better or am I making it up? Or, equally disturbing, is he really worse today or am I making it up? I know ... it IS real ... and it IS REALLY happening in THIS world at THIS time and in my life ... but not just mine, my DH's, our family's, yours, your family's, and so very many other's lives.

God bless us everyone!

divvi, there have been plenty of caregivers over on "the other site" who reported a rapid decline when their ADLOs were pulled off one or both meds. I doubt that the the drug companies are fiddling around with this ... I can't believe it could actually have much impact on their bottom line, for one thing. AD patients don't usually last all that long, after all, so the "market" for long-term users is very small compared to the market for "new" users.

IMHO the Aricept + Namenda regimen works very well, my DW was diagnosed about 6-7 years ago. She has taken both of these drugs for the entire period. In my opinion it has slowed the progress of her AD, she is now entering stage 5 and is beginning to show memory loss.

They say the only way you can tell if the drugs are doing any good is to stop giving them to the patient. I don't advocate this course of action as it can create some real problems. The only way I would discontinue the use of either drug would be on the advice of and under the supervision of her Neurologist.

I know we and our insurance company have spent around twenty thousand on dollars on these two drugs over a period of six years. IMHO it have been worth the money because we have been able to keep her active and in society for a longer period of time. I am not aware of any other drug combination that works as well.

you know better than that, Mawzy, my friend. You are taking SUCH good care of him... and you HAVE to get out of the house!

DW diagnosed in June '07 (51 yrs old) and put on Aricept immediately. Added Namenda 3 months later. Can't say that I saw any benefit to either but anything was worth a try. I posted here last fall that I decided to take her off both after the 1 year as she was declining so fast it was clear to me that the med's were doing nothing but costing me $$. My son, whow lives with me to help take care of DW, got very frustrated after I discontinued her meds and was positive her declined functioning & behavior was because I stopped the meds. To me, the only change was the incontinence issues. After 1 month off meds, I put her back on them thinking even if the incontinence improved it would be worth it. Well, that did improve but my son acknowledges her functioning and behavior did not and continue to slip rapidly. She is now in Depends all the time due to the accidents so I'm quite certain the med's aren't cutting it.
If there is anything I've learned from this site (and there has been plenty), it is that if you've seen one ALZ patient, you've seen one ALZ patient. The med's may "help" with some and may not help with others. Out of desperation, I think we are all willing to try anything. I'm kind of black and white and, with the struggles I had getting a Dx for wife, she was far too advanced for meds to help.
I asked my other son (just graduated with his degree in Music Therapy and has worked extensively with ALZ patients)what stage he thought his mother was in. He looked at me like it was a test or something and said "she's easily in stage 6", which is what I concluded a couple months ago. I just don't think meds are helpful at this point. Thenneck

Sunshyne - son starts an internship in June at a mental facility in Denver.

"They say the only way you can tell if the drugs are doing any good is to stop giving them to the patient. I don't advocate this course of action as it can create some real problems."

Jimmy, you are so right. Claude was on Exelon and Namenda for several years. I think it did slow the progression down considerably. He went on Hospice a month ago and the hospice doc took him off both 'cold turkey'. He has rapidly declined in this short time - severe confusion, agitation, delusions, garbled speech, etc. He started 'sundowning' so they put him on a trial of Depakote which is not working, only adding to the problems.

I am waiting for his case manger to call me as she met with the doctor last Friday. I really want to put him back on the Namenda and Exelon and see if it will help. Hw was a low 6 and now he is a high 6.

Diane V - If you will google Coconut Oil you will find about a lady Doctor in Fla. whose husband has AD. She gave him coconut oil and has documented his remarkable improvement. Since we felt we had nothing to lose, many of us here
have been trying the same with varied results. If you search on this site you will find the coconut oil thread with reports
many of us have made regarding the coconut oil and MCT oil. I have experienced improvements with the coconut oil and continue to give it to him along with the MCt oil.

Where do you find MCT oil? I went out yesterday to pick up virgin coconut oil and didn't find it. Is it 1 tsp of the MCT oil a day?

I found it online, thank you. I also ordered the Bach Flower Remedies Rescue Remedy Natural Stress Relief. I understand it can help relax you. I learn so much on these boards. Thank you.

Diane, a company called Accera is developing a new "medical food", which has gone through clinical trials and been approved by the FDA. The results from the trials were very exciting -- patients who do not carry the APOE4 allele actually improved, while those who do carry it did not decline as rapidly as patients who were on the placebo.

Some of the patients in the clinical trials were on cholinesterase inhibitors and/or namenda. The Axona helped improve their cognitive function over and above what the conventional AD meds do.

Accera will be launching the medical food as a prescription-only product called Axona.

The "coconut doctor" read about their clinical trials and looked up a patent. She misunderstood what the patent says, and decided that their product is just coconut oil ... which it is not. Coconut oil contains a little bit of the primary ingredient (caprylic acid) but is mostly lauric and myristic acids, which are saturated fats and not very good for you. In addition, in the Accera product, the caprylic acid is emulsified -- which is important for bioavailability -- and there are other substances in the food the enhance performance, too. Coconut oil is not emulsified and does not contain the additives.

Anyway, she decided to try coconut oil on her husband, rather than wait for the Axona (which was being called Ketasyn at the time). She says he has improved dramatically.

What the doctor hasn't been admitting very often is that she is giving her husband loads of MCT oil, about 4 times as much as the patients receiving the emulsified product in the Accera trials.

MCT oil is roughly two-thirds caprylic acid and one-third capric acid -- i.e., it is much closer to the Axona than coconut oil. If you buy "MCT Fuel" by Twin Labs, the MCT oil is emulsified, getting even closer to Axona ... but it still doesn't have the various additives etc.

So, many of us decided to try the MCT oil / emulsion / coconut oil or whatever, while we're waiting for the Accera product to become available. The MCT oil etc is better than nothing. Accera is a teeny-tiny company and was operating on a shoestring until very recently, when they received a nice infusion of venture capital to launch their product. Hopefully, it will be available around March.

Re the doses ... I did a post comparing the different amounts you would have to give for coconut oil vs MCT oil vs MCT Fuel to be the same amount that was used in the trial IF all of the fats in coconut oil were digested/metabolized the same way and IF all the fats were equally bioavailable. In their clinical trials, Accera was giving participants 20g of the caprylic acid (which is an MCT) per day. This is roughly the equivalent of:

5 Tablespoons (15 teaspoons) of MCT Fuel (the orange-flavored emulsion)

2.25 Tablespoons (~7 teaspoons) of coconut oil*

1.5 Tablespoons (4.25 teaspoons) of MCT oil

*This is assuming lauric and myristic acids have the same potential for being converted into ketone bodies as caprylic acid. I'm not sure that they do ... they can be processed by the lymph system as well as absorbed by the portal vein.


START SLOWLY ... you can get cramps and diarrhea if you don't ramp up.

I keep the Bach Rescue Remedy on my desk. I don't use it often and I don't need a prescription anti-anxiety medication at this time, but once in a while... Does it work? Who knows. What I do know that if I take it, whether it is a placebo reaction or if the stuff is working, I tend to mellow out. Again, like the coconut oil, can't hurt and might help.

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