Greetings...

It seeems everyone's reaction to the meds is slightly different...so I thought I would share what we've learned & observed.

Mom was given a sample package of Aricept and also presribed something...maybe it was Risperdahl (spelling?)...as a sleep aid. She was up ALL night! We have cut both meds (until her next doctor appointment) but we're pretty certain it's the Aricept that did it. A co-worker told me Aricept is like caffeine, it sharpens the mind, and all the other "benefits" of a stimulant.

In speaking with the nurse practioner at our last office vist, I asked about trying just Namenda and she advised that Namenda is to be used WITH Aricept. However, after seeing the other postings, apparently it's not the philosophy of all doctors.

So we are back to Square One with my mom...unless I can convince the doctors to try Namenda alone since Aricept made things worse.

I echo your appreciation, George, for this site and everyone's postings...it certainly is helpful!

Regards,

Boofanne

This is my first visit to this board. My mom is newly diagnosed with dementia, she has been through testing, vascular, MRI, etc. She was originally put on ARicept with awful results. She became much more confused and kept saying she was having multiply conversations, over and over again. We discontinued the Aricept and she improved. Recently she was put on Namenda, but experienced the same result. She asked to stop the medication because of the increased confusion. Her doctor cautioned us that most of the medications were mediocre at best, and some people did very poorly on them. Mom seems to be one of them.
I have found the information here very helpful. Has anyone else had a similar experience with no medication being helpful? I'd love to hear from someone with a similar experience. Thanks, Kathy ekinstone@yahoo.com

My husband age 59 is on only Namenda for the Alz. He is other medications for other health problems. He is in stage 5-6, but still working. The Namenda has helped him. He is not as withdrawn, and does function better and remember things better, but the memory is unpredictable. I believe it has made a difference with him and he has no side effects. He is reading the newspaper and commenting on things he reads. This is so unusual since he wasn't even opening the paper up. Just little things I have noticed are better, but not a wonder drug. Good luck.
Barb

Greetings to ekathi...

My mother also had the same experience with Aricept and her doctor advised us that Namenda is to be used in conjunction with Aricept and they will not prescribe it (yet) as the sole & primary med...which is OK with me. Truthfully, I believe my mother is better right now without the meds. After hearing your experience, that reinforces our decision right now. If (or should I say "when") she gets any worse, perhaps we'll have to re-visit that topic.

Thanks for sharing.

Boof

I am so happy to see so many responses to the drug questions. I think if we all start to share our experiences maybe we could find the corrtect drug cocktail some day that might help. My Dad age 79 has stopped taking the aricpet, still takes namenda and has for the last two months been taking a drug called seroquel to help with the paranoia he was experiencing. Every now and then he knows who we are and can communicate. The biggest benefit of the seroquel is that he is no longer scared in his own home or of his own family. He still sees things that are not real but at least they do not scare him! We started taking the seroquel after I read on this site that someone else used it. I asked the Doctor and he was willing to try it. THANKS TO EVERYONE WHO CONTRIBUTES THEIR EXPERIENCES ON THIS SITE IT REALLY DOES MAKE A DIFFERENCE!

quote:

Originally posted by Boofanne:
Greetings to ekathi...

My mother also had the same experience with Aricept and her doctor advised us that Namenda is to be used in conjunction with Aricept and they will not prescribe it (yet) as the sole & primary med...which is OK with me. Truthfully, I believe my mother is better right now without the meds. After hearing your experience, that reinforces our decision right now. If (or should I say "when") she gets any worse, perhaps we'll have to re-visit that topic.

Thanks for sharing.

Boof

My mother was on Aricept and Namenda since January. Her improvement was dramatic. She was not as withdrawn and had much more of her old personality, and seemed to be confused less. Her memory came and went, but even that was an improvement.

A week ago she stopped taking them because she is convinced that they have given her some kind of eye inflammation. There is absolutely no factual basis to tie these together, but you can't tell her that. In a week's time she seems to have lost some of what she gained. We hope to get her back on them soon.

Hi all, I've been reading the string and I want to offer some professional and caregiver insite as I am both.

First I've noticed statements that Namenda is too new for doctors / pharms to know what it does as well as combination therapy w/ cholesterese inhibtors such as Aricept, Exelon, or Reminyl. Namenda (memantine) was discovered by Eli Lilly about 30 years ago, and has been used in the EU as a pain releiver, Parkinson's / momevement disorder Rx and for treatment in Alzheimer's. It've history is well proven in combination therapy, but mono therapy is not real productive. I also want to address some comments of side effects within a few days or weeks of taking a medication, you shouldn't see any improvement or real noticable side effects until about 4 to 6 weeks of taking the Rx. Additionally, hallucinations, agitation, loss of functionality is a part of the disease and this can happen at any time. One day you're able to brush your teeth, the next day it's more difficult. This is completely plausable.

Aricept should be taken first, then namenda should be added. If a person has nightmares with Aricept and taken in the night, it shoudl go to morning or vice versa. If you continue to have issues with ARicept switch to Exelon or Reminyl, but realize they also have Gastro side effects, and are the same class as Aricept.

The reason why you have Aricept and Namenda is they awork on different areas of the brain. Within the micro areas where neuro transmission occur, both address the flow of certain proteins or chemicals.

In my experience professionally we have seen increased adgitation in some individuals where as their sundowning is more significant. Sometimes more depression is observed.

You'll have to evaluate if you want your loved one happly confused or more aware and adgitated. If they are depressed treat it with a med such as Lexapro, if they have behaviors try Seraquil. A disaster is Namenda Aricept and Resperidol, not good combo either is haldol.

Personally Aricept and Namenda have worked well with my family members affected. I hope this helps you, also as I've told everyone today, try this book Alzheimer's Essentials; Practical Skills for CAregivers, carmapubs.com is where you get it. I got it this past week, my family md told me about it...it is terrific! try it out. it may help with some other questions, it's really comprehensive. All the best! you're doing a great jobQ

Byryr:
When you abruptly stop Aricept or Namenda or together the person will sharply drop in their abilities. You'll find this data all over the internet, I've seen it professionally and personally with my Dad.

The issue is according to the studies is that when someone stops taking the Rx they loose abilities or their prowess for those decrease. Those that are started on the Rx again, never return to the level they were previously before d/c the Rx.

You should put her back on the Rx, if she won't take her meds, try crushing them (if MD okays) and putting it in ice cream, apple sauce, etc. or put them in chocolate. Remember that you have to be creative with this disease! Try that approach. But she'll have better quality of life longer on the Rx than w/out in my opinion. Also try a book, I've mentioned it thorughout my time on the board today, I'm really raviing about it b/c it's the best I've ever read. My family MD told me about it, get it at carmapubs.com it's called Alzheimer's Essentials, Practical Skills for Caregivers. It was very helpful, I'm recommending it to the families / caregivers I work with. It addresses a majority of the issues on this board.

Mim-

quote:

Originally posted by byryr:
My mother was on Aricept and Namenda since January. Her improvement was dramatic. She was not as withdrawn and had much more of her old personality, and seemed to be confused less. Her memory came and went, but even that was an improvement.

A week ago she stopped taking them because she is convinced that they have given her some kind of eye inflammation. There is absolutely no factual basis to tie these together, but you can't tell her that. In a week's time she seems to have lost some of what she gained. We hope to get her back on them soon.

Mim...

Thanks so much for your insightful response and sharing from your personal & professional experience with Aricept/Namenda. Good point about medicine management being a personal decision whether the loved one is happily confused or aware & agitated. I am going to look for the book you recommended...and continue to learn more about this disease.

Thanks again,

Boof

I am wondering if anyone is trying any natural supplements with the namenda and aricept? I have done some reading on huperzine A and Sage oil capsules. Has anyone used any of these natural supplements?

No problem boof, you can get the book at any major book reseller or online, I got mine online...it's really good, puts the 36 hour day to shame, makes it look like war and peace!

good luck!

quote:

Originally posted by Boofanne:
Mim...

Thanks so much for your insightful response and sharing from your personal & professional experience with Aricept/Namenda. Good point about medicine management being a personal decision whether the loved one is happily confused or aware & agitated. I am going to look for the book you recommended...and continue to learn more about this disease.

Thanks again,

Boof

Louann there is no data indicating that these treatments work, I would not mix any herbals with the Rx. Remember the Rx is made of various components and they could be herbs...you may midigate a response that is unpleasent. You should try what is proven as part of the "cocktail" approach: Namenda, Aricept, Vit E, B12, B6, Folic Acid and Omega 3 (fish oil) pills. They work to improve CNS (Central Nervous System Function)...try it! you may like it! also check out a great book I must recommend every time, Alzheimer's Essentials; Practical Skills for Caregivers, it talks about meds and therapies...get at any book store or at carmapubs.com

I came across this forum topic through Google Alerts. I hope you'll welcome this post and our sincere desire to share information that can possibly help overcome difficulties.

Our passion for alternatives to conventional therapies was brought about by the experiences of people close to us and those they personally know. They've been truly inspiring, and we're truly happy and blessed that we've been a part of their journey back to good health.

We've put up a website full of information about such a natural alternative that even conventional doctors now accept as a safe alternative to prescription and over-the-counter drugs.

We're not going to ask you to buy anything. All we want to do is to provide you information that we hope will help you find a better way to address Alzheimer's. It's then up to you what you wish to do with that information.

Please have an open mind, although it's perfectly alright to be a skeptic. Some of those we personally know started off that way (including a close family friend who actually wanted to "prove us wrong" by consulting with her doctor and had a medical exam to get her current health status before using a product based on this fruit).

For a conventional doctor's specific reference to Aricept, go to http://mangosteen-juice-online.com/mangosteen-clinical-experience.html.

For truly inspiring personal stories from those (some were conventional doctors themselves) who benefited from its use, go to http://mangosteen-juice-online.com/mangosteen-testimonials.html.

For actual clinical case studies on this fruit, go to http://mangosteen-juice-online.com/mangosteen-clinical-studies.html.

For published, independent scientific research done on it, go to http://mangosteen-juice-online.com/mangosteen-research.html.


All the best,

Oscar and Mimi

Hi - I am a first time poster, but my dad has been taking aricept for quite some time and it helps, we then added namenda about two years ago, and he seems to do okay with it. However he has had four attacks of sepsis in the past two years, since the the last attack about five months ago he has started having panic attacks that he has sepsis again, so the doctor presribed lexapro which made him kind of giddy so they switched it to paxil. However in reading about paxil and aricept, I have read they counteract each other and the paxil seems to do no good right now. Small doses of xanax .25mg seem to help. Would anyone have any suggestions on how we should try to give dad his dosages of aricpet and namenda? thanks

I will be clear again about my post previously.
HERBALS DO NOT WORK. There is no scientific evidence aside from B12, B6, Folic Acid, Vit. E. I do not believe that there is any reason to post such a message. In fact many of the herbals such as ginko and such.

Aricept, Namenda work well. The herbals do not address the issue of Aceytlecholine or N-methyl-D-aspartate and the abnormal response of glutmatergic action / receptor binding in Alzheimer's.

It's snake oil

dplush:

You're dad should nix the paxil, it's been contraindicated for dementia in the EU and is off the market. It's also not indicated for elderly in many studies. Xanax can cause a rollercoaster effect. I would take him back to the lexapro, giddy isn't bad. It just means he's activated, or hyper. I'd also look at celexa.

Instead of Xanax I'd look to seraquil in very low dose. that should help. I offer a piece of advice on reading, it's staple for me as I loved the book and want to spread the word, talks about these issues. Alzheimer's Essentials; Practical Skills for Caregivers, get it any bookstore! good luck.

Dear Mim,

Thanks for your help. I will get a copy of the book you mentioned.

thanks

Dplush: enjoy I hope it helps you, I know it opened up a real understanding that I didn't have before. I really like it....just don't want people to think I'm spamming....it's just a great resource we all should know about.

My Dad experienced paranoia and hallucinations and started to become violent. He was on both Aricept and Namenda we asked the Dr for Seraquil and it really helped! He is much calmer with no side effects! He has been on it for three months. It takes awhile to get the correct dosage. When he first tried it he slept to much we just needed to cut the dosage.

quote:

Originally posted by Mim:
dplush:

You're dad should nix the paxil, it's been contraindicated for dementia in the EU and is off the market. It's also not indicated for elderly in many studies. Xanax can cause a rollercoaster effect. I would take him back to the lexapro, giddy isn't bad. It just means he's activated, or hyper. I'd also look at celexa.

Instead of Xanax I'd look to seraquil in very low dose. that should help. I offer a piece of advice on reading, it's staple for me as I loved the book and want to spread the word, talks about these issues. Alzheimer's Essentials; Practical Skills for Caregivers, get it any bookstore! good luck.

thanks Louann :-)!

Mim: I am a first timer and read your comment in July that "A disaster is Namenda Aricept and Resperidol". Why do you say this? My mother started Aricept six months ago when the geriatric psych that had been treating her for 8 years accepted that she was having memory loss. Although we could see no improvement in memory or even a slowing of the memory losses, she was having no adverse effects from the Aricept so she has remained on it. The Aricept was added to her existing meds, Remeron, Trazodone, and Klonipin. Recently she had to spend a week in a hospital's geriatric behavoral health facility and the hospital's psych doc removed the Remeron and added Respiridol and Namenda. So your comment that this could be a disaster concerns me. Can you elaborate?

Sure: Aricept and Namenda are not the disaster. It's the Resperidol that is, it increases fall risk and often can adgigtate someone..it's really good for auditory hallucinations but not for behaviorial control. I'm not surprised to hear that a psych did this. I am a nurse and have 3 members of my family with the disease, I work in LTR and I see this all the time. I also speak on AD / teach, we at our facilities do not use Resperidol b/c of the risks. Also there are some black box warnings on Respierdol I'd look at on FDA.gov.

Why did the doctor remove the Aricept? If he did certainly she will decline, you will not see Aricept working which is great! they are maintaining!

But that said if this is working for her leave her be for now. But I have not seen many people respond very well to the treatments you mentioned aside from Traz, Aricept / Namdenda.

Seraquil or Depokote are good in low dose for behaviors. But part of my questions is did the doctors look for a UTI or enviornmental or social triggers for the behaviors?

Many times psychs add meds just b/c they can. My suggestions also is you seek an Alzheimer's specialist call your local AD Assoc. they can help.

Did I elobrate or do you need some clarification...let me know! good luck!

Mim: Did not mean to imply that Aricept was removed. She is still on Aricept, Trazodone, and Klonopin, and she is now titrating Namenda in 5mg increases over 4 weeks. Only Remeron was removed cold turkey and substituted with 10mg Lexapro which I forgot to mention before. There had been a UTI but it was treated. The 0.5mg Risperdal was added for paranoia/dementia psychosis, but does not seem to result in correcting the behavioral problem. I have seen the FDA warning on atypical antipsychotics such as Risperdal and Seroquel meds due to cerebrovascular adverse effects, etc, but the traditional meds had an even higher incidence of adverse effects, so what is the option? The doc is head of a geriatric behavioral health center at a respected hospital so it is difficult to question his actions. Geriatric psych doc she had been seeing for 8 years is hesitant to suggest that Risperdal and Lexapro are not appropriate. He might not have treated with the same meds, but the hospital doc's actions are not "wrong", just a different approach.

This is my first time having to deal with a dementia/AD situation and it gets so frustrating having to accept vague assurances of effectiveness of different meds, different levels of care in different assisted living facilities, uncertain or conflicting diagnoses, etc. When it was first an anxiety disorder, Buspar worked fine until it developed into depression and then Remeron, Trazodone, and Klonopin worked fine. But now that it is dementia/AD, the whole situation becomes so unclear it often makes me depressed and angry. I don't want to accept the uncertainty that seems to be inherent in the situation. Any other info you can provide would be appreciated.

quote:

The doc is head of a geriatric behavioral health center at a respected hospital so it is difficult to question his actions. Geriatric psych doc she had been seeing for 8 years is hesitant to suggest that Risperdal and Lexapro are not appropriate

I am sorry to hear of your frustration and depression. I know that I feel the same way in terms of meds for my dad to take. What I suggest is to get another doctors opinion. I know it would throw a third doctor in the ring but look around and research other geriatric doctors and find one. Make a list of hard questions to ask. I think part of the difficulty is so many of the drugs are really new drugs and I think they are pretty powerful drugs so I have to learn to be patient in seeing how these drugs work, currently Namenda, Aricept, and xanax so far works the best, we have nixed paxil, lexapro, celexa and dad seems to be going well as it can for now.

Has anyone heard of that nutrient SAM-E, its good for depression and might have postivie effects on dementia?sometimes

I still think the docs have to do a lot of experimenting with drugs to find a combo that works for each patient. My mom was on Xanax for quite a while but now takes a very small amount of Risperdal and is pretty stable - also takes a small dose of Zoloft. When I brought her here she was on a lot of meds and this doc has eliminated a lot of them but she is doing well at the moment. Anyway, my point is that it doesn't seem as though there is a "one size fits all" protocol for our Alzheimer's patients.

I'll comment first on combination, unfortunately we'll never find an RX combo that will work for everyone, this is all trial and error.

As well, a well respected geropsych does not mean he's a dementia specialist. Pysch focuses on the behaviors not the organic illness. I've been a nurse for over 15 years and worked in psych and long term care. There is a gero psych here in my town, he has a great center, terrific with behavioral cases, psychosis, but not dementia / AD behaviors.

There is a question in medicine is this disease behavior oriented or organic. The answer is it is both. Therefore there must be a multipronged approach, American Academy of Neurology offers the advice that one should use a primary neurologist who treats the AD, a consulting geropsych if the person's behaviors are extreme and oriented to violence or major depressive disorder.

I second the thought you need to go find a neurologist that is a dementia specialist, in my personal and professional opinion this is what is best. In my 5 years strictly working with AD / dementia I have not found a geriphysch that does a better job than a specialist neurologist.

As I said my opinion, but ulitmately you need to do what you feel is best. good luck!

quote:

Originally posted by Mim:
I will be clear again about my post previously.
HERBALS DO NOT WORK. There is no scientific evidence aside from B12, B6, Folic Acid, Vit. E. I do not believe that there is any reason to post such a message. In fact many of the herbals such as ginko and such.

Aricept, Namenda work well. The herbals do not address the issue of Aceytlecholine or N-methyl-D-aspartate and the abnormal response of glutmatergic action / receptor binding in Alzheimer's.

It's snake oil

I think that not validating HOMEOPATHY is snake oil. I have been re-reading this whole series of posts, and I am mortified that someone would "lump" Vitamins, Herbal medicine, and other complimentary medicines all together and say "they don't work". I actually think this statement should be retracted, esp if it came from a professional. A drug company employee, I can understand would make that kind of claim.

I will say that Homeopathy has been 100% successful in treating my mothers progresive dementia. And we have been able to get her off all the "dope" . She was on Zyprexa, as the early onset drugs like Namemda, and Exceleon-early on caused bad side effects. After placing her in a secure ALZ floor, and after she had 3 bad falls-because of the Zyprexa side effects-she is now on a German Combination Homeopathic that has brought her back to some reality. She is not agressive anymore, still obviously lost her sense of time and space, and her appetite and language skills have returned. She is also Bach Flower rescue Remedy, three to four times daily as well as Calms Forte, in the PM to help with sundowning behvaiors. After being on the homeopathic which we started when we stopped Zyprexa, she immediately became more alert.
When she is feeling even a little agitated, Rescue Remedy is administered and she almost within 5 minutes returns to calm. People cannot believe how much calmer she is, and how much more cognitive she is now.
We had to take my mother to a geriatric psyche ward, 6 months ago, and all they did was over dope her. Heres what I say: the dope(overpriced, overprescibed, drugs like aricept, namenda, zyprexa) doesn't work, and everyone should pay alot of attention to what RX's are being used.
You must have a good physician that is also open minded and perhaps does not take golfing trips with their drug reps.
I truly believe that the institutionalized setting is perfect for modalities like homeopathy, and vibrational remedies like Bach Flower Remedies.
Beware of those who claim anything is snake oil.

I believe you've taken my comments complete. out of contex and I clearly see some defensive wording.

Again, there is no scientific evidence of what you are saying. I also find great fault in any one who would pettle such information on this site. You are giving individuals false hope.

Your mother could be doing well due to the fact that she is eating better, has social activity aside from you, with new experiences, proper hydration, medication management and hydration. This is common upon placement to see an upswing.

I will be very cocky here and say you do not have a PhD, nor an MD and it is obvious you do not understand the biological consiquences of such untested herbal medications. These can cause serious side effects within the dementia brain. Many people on this site have given up hope and taking them off the medication that work for them for a "herbal" is suicide. Cholenestrase inhibtors when d/c cause a rapid decline b/c of the loss of it's helping properties...there is no evidence that your claims support NMDA function, cholenergic system support or neuroprotective effects this is what is affected in Alzheimers.

You are entitled to your opinion, but if it does not have SOLID evidence scientifically proven evidence of success it IS snake oil. It is inherent in us to believe there is something more for this disease, WE ALL want that.

There are many medications and proven vitamins which are mentioned here previously that will help. Once again, not proven by co-hort / collaborative peer reviewed publications / studies it's snake oil.....

quote:

Originally posted by Mim:
I will be clear again about my post previously.
HERBALS DO NOT WORK. There is no scientific evidence aside from B12, B6, Folic Acid, Vit. E. I do not believe that there is any reason to post such a message. In fact many of the herbals such as ginko and such.

Aricept, Namenda work well. The herbals do not address the issue of Aceytlecholine or N-methyl-D-aspartate and the abnormal response of glutmatergic action / receptor binding in Alzheimer's.

It's snake oil

Hi Mim,

I do sincerely respect your point of view indicated in the above post about "herbals", which I assumed to be a response to my earlier post about the Mangosteen "alternative".

It matters little to me, too, whether or not you're a drug company employee as intimated elsewhere in this forum. What really matters most is that Alzheimer's patients --- and those who care for them --- do and must have options, especially those for whom namenda, aricept, or any other drug provide no benefit or exacerbate or aggravate their condition.

Due diligence also is equally called for when thinking of using these drugs. For example, you can go to the Physician's Desk Reference website on the Internet for more info on Aricept and look at its side effects and special warnings: http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/ari1027.shtml

An increasing amount of scientific evidence points to chronic inflammation as a major underlying cause of chronic diseases such as Alzheimer's. This relatively new body of knowledge may have inspired a Time cover story in February 2004 on Inflammation, which took a "user-friendly" look at the link between chronic inflammation and a number of ailments such as Alzheimer's.

Research has shown, it says, that for some reason, glial cells --- which nourish and communicate with neurons --- gone out of whack produce chronic glial cell activation, resulting in a chronic inflammation state in the brain.

Now, where's the science behind Mangosteen's ability to help with Alzheimer's?

This page on Mangosteen Research will provide you some helpful background information on the independent scientific research studies that have been done on Mangosteen.

Please scroll down to the section named "The Mangosteen Fruit As Anti-Inflammatory". You'll find references to scientific studies done by Japanese researchers on Mangosteen and Inflammation (click on the superscripted reference numbers 11 and 12 to go directly to the non-profit, National Library of Medicine website, an independent repository of peer-reviwed research studies performed worldwide). The studies looked promising enough that Pfizer was rumored to have hired the services of the head researcher to continue research on it.

Is Mangosteen safe? The largest HMO in Utah, for example, published its "Complementary and Alternative Medicine (CAM) Guide For Physicians" for distribution to its entire network of health care providers. Included in its list of acceptable CAM products is a brand based on the Mangosteen. That's the largest HMO in Utah accepting this Mangosteen brand and telling its provider network that this product based on the Mangosteen is okay.

Please right-click on this link to download an abstract of this Guide in Adobe Acrobat (PDF) file format.

There are a few "caveats" on Mangosteen. Please go to this Mangosteen side-effects page for more info.

We do want to have a mature, rational and respectful exchange on these things, and we need to be able to offer options for those who suffer from this disease and those who care for them.

All the best,

Flip

quote:

Originally posted by Mim:
I believe you've taken my comments complete. out of contex and I clearly see some defensive wording.

Again, there is no scientific evidence of what you are saying. I also find great fault in any one who would pettle such information on this site. You are giving individuals false hope.

Your mother could be doing well due to the fact that she is eating better, has social activity aside from you, with new experiences, proper hydration, medication management and hydration. This is common upon placement to see an upswing.

I will be very cocky here and say you do not have a PhD, nor an MD and it is obvious you do not understand the biological consiquences of such untested herbal medications. These can cause serious side effects within the dementia brain. Many people on this site have given up hope and taking them off the medication that work for them for a "herbal" is suicide. Cholenestrase inhibtors when d/c cause a rapid decline b/c of the loss of it's helping properties...there is no evidence that your claims support NMDA function, cholenergic system support or neuroprotective effects this is what is affected in Alzheimers.

You are entitled to your opinion, but if it does not have SOLID evidence scientifically proven evidence of success it IS snake oil. It is inherent in us to believe there is something more for this disease, WE ALL want that.

There are many medications and proven vitamins which are mentioned here previously that will help. Once again, not proven by co-hort / collaborative peer reviewed publications / studies it's snake oil.....

I will give anyone any information I want to,,,And thank god I am not an MD or PHD, or even work for a drug company, as my info would be jaded.
NO I find great errs, in yet another post.
The only reason my mother is doing better, and eating, and even drinking, is because of her homeopathics. As a matter of fact the day, we started her on a German Homeopathic-why would you argue with the germans?? They have homeopathic hospitals..they use homepathic products on those with dememtia, and they work,. My mother is so much better OFFF the dope OFFF the Zyperxa-shes awake, cognitive, eating, engaging, and the funny thing is shes not falling, as she was on the Zyprexa.

You are mistaken terribly; serious side effects of herbal medicine??? Show me one time its effected someone with alz/dementia..really. I am digusted with the over medding that I see going on all the time. All those drugs, aricept, execelon, Namenda, are all not even approved by fda for long term use, yet they are so cleverly "evergreened" so they have forever patients.
More people should question every drug!!! Where maybe one can use a Homeopathic Flower Essence instead of an ativan or respiridal- they should.
Heres more of my example:
Zyprexa= cost billed to medicare (30 days) $778.00
Homeopathic product by Heel (name of company)
30 days(private pay) $15.00
Calms Forte-by Hyland ( used alot for crying babies for calming) But also works great for sundowning- 100 ct $4.55
Ativan Institutionally billed $13 a pop
heres the moral of the story, and I believe in all modalities. Institionalized people with Alz Dement-are in their last chapter; should we dope them to the next millenuem, or try using gentle natural things like Homeopathy which is a medicine, and recognized by FDA, should be try to calm them gently or with a benzo?? Should we control their dementia behaviors with Zyprexa or Rescue remedy??
I will take this argument on !! And Win.

quote:

Originally posted by flipit:

quote:

Originally posted by Mim:
I will be clear again about my post previously.
HERBALS DO NOT WORK. There is no scientific evidence aside from B12, B6, Folic Acid, Vit. E. I do not believe that there is any reason to post such a message. In fact many of the herbals such as ginko and such.

Aricept, Namenda work well. The herbals do not address the issue of Aceytlecholine or N-methyl-D-aspartate and the abnormal response of glutmatergic action / receptor binding in Alzheimer's.

It's snake oil

Hi Mim,

I do sincerely respect your point of view indicated in the above post about "herbals", which I assumed to be a response to my earlier post about the Mangosteen "alternative".

It matters little to me, too, whether or not you're a drug company employee as intimated elsewhere in this forum. What really matters most is that Alzheimer's patients --- and those who care for them --- do and must have options, especially those for whom namenda, aricept, or any other drug provide no benefit or exacerbate or aggravate their condition.

Due diligence also is equally called for when thinking of using these drugs. For example, you can go to the Physician's Desk Reference website on the Internet for more info on Aricept and look at its side effects and special warnings: http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/ari1027.shtml

An increasing amount of scientific evidence points to chronic inflammation as a major underlying cause of chronic diseases such as Alzheimer's. This relatively new body of knowledge may have inspired a Time cover story in February 2004 on Inflammation, which took a "user-friendly" look at the link between chronic inflammation and a number of ailments such as Alzheimer's.

Research has shown, it says, that for some reason, glial cells --- which nourish and communicate with neurons --- gone out of whack produce chronic glial cell activation, resulting in a chronic inflammation state in the brain.

Now, where's the science behind Mangosteen's ability to help with Alzheimer's?

This page on Mangosteen Research will provide you some helpful background information on the independent scientific research studies that have been done on Mangosteen.

Please scroll down to the section named "The Mangosteen Fruit As Anti-Inflammatory". You'll find references to scientific studies done by Japanese researchers on Mangosteen and Inflammation (click on the superscripted reference numbers 11 and 12 to go directly to the non-profit, National Library of Medicine website, an independent repository of peer-reviwed research studies performed worldwide). The studies looked promising enough that Pfizer was rumored to have hired the services of the head researcher to continue research on it.

Is Mangosteen safe? The largest HMO in Utah, for example, published its "Complementary and Alternative Medicine (CAM) Guide For Physicians" for distribution to its entire network of health care providers. Included in its list of acceptable CAM products is a brand based on the Mangosteen. That's the largest HMO in Utah accepting this Mangosteen brand and telling its provider network that this product based on the Mangosteen is okay.

Please right-click on this link to download an abstract of this Guide in Adobe Acrobat (PDF) file format.

There are a few "caveats" on Mangosteen. Please go to this Mangosteen side-effects page for more info.

We do want to have a mature, rational and respectful exchange on these things, and we need to be able to offer options for those who suffer from this disease and those who care for them.

All the best,

Flip

I agree. We have the right to ask questions, and also the right to ask for alternatives. There is proof, the other countries that have different drug economic policies different than ours, have homeopathic hospitals..all over Germany. Plus homeopathy has been validated as aMedicine for centuries. CENTURIES!!!!!
I say why not try something, that might work-instead of just doping some one in the state of dementia to a different dementia. My mother was so jibberish and hallucinating on Zyprexa, it made her worse, much worse than she ever was. Now shes got her language skills back, and no more hallucinations!!

quote:

An increasing amount of scientific evidence points to chronic inflammation as a major underlying cause of chronic diseases such as Alzheimer's.

Flip:

Flip: I appreciate your passion for mangosteen and thank you for your reply and unfortunately you have me confused as an employee of a pharma which is contrary to what I do. I have three family members affected by the disease, I am a clinician and have performed research in the past at UCSF, U of Miami Med, and U of FL. Additionally I haven spoken nationally and regularly in the media and CME courses on the topic of AD as well as sit on various neurology advocacy boards including the Alzheimer's Assoc in central California. I am here on this site for support myself and to lend my own knowledge to help others, gain from the experience and become a better practitioner.

As well over the past 4 years I have seen hundreds of patients and families who are treated with and without any kind of therapies. Unfort. and sadly herbals such as ginko and others have been proven in many articles posted in the Lancet, American Journal of Alzheimer's Disease, Neurology and JAMA that indicate they have no effect what so ever. What has been proven and proven again recently is that Folic Acid, B12, B6 and Omega 3 Fatty Acids do play a role and possibly together with certain cholenergics / NDMA antagonists maybe have neuroprotective properties, but this is yet to be proven. So therefore I believe my statements are qualified.

Flip you said, "An increasing amount of scientific evidence points to chronic inflammation as a major underlying cause of chronic diseases such as Alzheimer's"

You are correct to a degree that inflammation was noted by Alois Alz. in Auguste D and later seen in several other patients. There is good documentation that inflammation, particularly elevated levels of homocistine play a role in this process and more than likely affect the microvessicles. But there is much more on the biochemical level to be proven that goes beyond inflammation, homocistine levels, beta amalyoid plaque and tau tangles. So giving a board statement that inflammation is the key ingredient for the disease process is unfounded and in my opinion too simplistic. You see inflammation is a theory as is the diabetic, hypertension, obesity and pessimistic persons theory. We simply do not know. Can your risk factors increase with vascular disease, yes they can, is there role w/arterial / vascular inflammation more than likely yes, it is the key factor, not that simple.

I have not seen any information on Mangosteen in any of the leading journals to support your claims. I would like to believe we have more options, but someone in good faith who understands the complexities of treatment should not dispense information that is misleading. There is no magic bullet. As well Mangosteen may have a safety profile, but it is not an FDA approved treatment and there is no peer-reviewed credible publications which dispense a safety profile which shows limited side effects with medications such as the cholenergics, nmda antagonists, psychotropics or SSRI class. There is no specific indication for it's use in Alzheimer's or dementia. There could be serious side effects that could potentially lead to aberrant behaviors, cardiovascular or cerebral vascular incidents that are unknown.

The study that you speak of is not specific to mangosteen and is a case study for a CAM Guide for pharmacists. Although it may have mention this is not a specific study on the herbal and has no scientific merit to say it is for safe usage in Alzheimer's disease. This is very misleading to someone who does not understand a scientific paper / publication.

I find this in itself to be contemptuous on your part and thus reiterates my position that you are carpet bagging a bag of goods on this site to those who are truly in desperate need of help, hope and most of all support. In terms of indecent studies there, especially nonprofit groups that you do not know where the funds are coming from and certainly could be influenced by a manufacturer. I highly doubt Pfizer would be looking specifically at an herbal as a product, could components of this mangosteen be utilized to prove positive response in the pharmakentics of a new novel therapy, yes it could, but once again this is not being discussed as a treatment for Alzheimer's disease and since inflammation is a theory at this time you shouldn't be pushing it so hard as once Alzheimer's has been diagnosed the person is or has been affected by the disease for 3-5 years before the Dx. As well, changes in the brain according to a Winblad study published in 2001 as well as reiterated in Feldman, Small studies 2000-2003 show there maybe ischemic changes in the brain as well as plaque formation in mid-life, once these changes occur there is no reversing them. Thus the need for Mangosteen once the disease has been diagnosed is more than likely moot. Could one take this as preventative I would have to personally see studies in Neurology, Experimental Biology, Pharmacopia or the Lancet among others that support your argument.


Good debate.

Coffeesnob...

In all fairness, behaviors should be controlled through redirection and validation rather than any type of psychotropics.

Belief is strong in denial. Maybe you have found belief in something that may work for you personally, but it is not for the masses and people who are uneducated could say,"I'm going to stop my mom's aricept and try this homeopathic." Well, if they do, mom will crash b/c of the lack of inibition of acetylcholenesterase. Mom will never return to the level she was at before the d/c of Aricept.

I am very happy to hear that this works for you. That you have faith. Zyprexa if you did not know has a contraindication for dementia patients at this time.

If you are looking to control behaviors it first starts with approach, the way you speak, the body language / facial experessions, the way you may or may not validate and redirect. It could be that once you gave your mother this heomeopathic medication you found yourself to be calmer, therefore your approach maybe different.

As well, if you d/c the Zyprexa that alone could cause Mom to be more aware and have more ability to do more for herself. Dementia / AD is a disease that is trial and error with treatment and Zyprexa may not have been for her. I would not have recommended to you in the first place to use any psychotropics. If mom has a falure to thrive I would ask you to take her to a social model day care, take a break and let someone else give it a whirl with her, especially if you were overwhelmed.

If it works for you that's great. I just don't think we should carelessly post discussions on unscientifically proven treatments. It's not fare to those who don't understand the essentials of therapuetics.


We must be responsible on this board and give advice that is correct and proven. But never, ever turn to a mood modifer, psychotropic first always look for the reasons behind the behavior, is it enviornment? approach? UTI? Depression? Mood modifying medications always should be the last resort.

Good luck to you!

quote:

Originally posted by Mim:
... I am a clinician and have performed research in the past at UCSF, U of Miami Med, and U of FL. Additionally I haven spoken nationally and regularly in the media and CME courses on the topic of AD as well as sit on various neurology advocacy boards including the Alzheimer's Assoc in central California. I am here on this site for support myself and to lend my own knowledge to help others, gain from the experience and become a better practitioner...

... giving a board statement that inflammation is the key ingredient for the disease process is unfounded and in my opinion too simplistic...

... I have not seen any information on Mangosteen in any of the leading journals to support your claims...

... As well Mangosteen may have a safety profile, but it is not an FDA approved treatment and there is no peer-reviewed credible publications which dispense a safety profile...

... There is no specific indication for it's use in Alzheimer's or dementia. There could be serious side effects that could potentially lead to aberrant behaviors, cardiovascular or cerebral vascular incidents that are unknown.

... I find this in itself to be contemptuous on your part and thus reiterates my position that you are carpet bagging a bag of goods on this site to those who are truly in desperate need of help, hope and most of all support. In terms of indecent studies there, especially nonprofit groups that you do not know where the funds are coming from and certainly could be influenced by a manufacturer...

... Could one take this as preventative I would have to personally see studies in Neurology, Experimental Biology, Pharmacopia or the Lancet among others that support your argument.

Good debate.

Hi Mim,

Thanks for your response. It may appear oblique in some parts, but I do appreciate the exchange of ideas --- especially with a nurse. I have a brother who is a nurse, two sisters-in-law who are nurses, and a former girlfriend who is a nurse. I have great respect for your profession.

However... The statement that inflammation is a key ingredient in chronic illnesses, including Alzheimer’s Disease, is NOT unfounded. Unfortunately, your years of research on AD appear to have missed the studies that point to inflammation as key in the onset of AD.

For example, a long-term, 15-year study on Alzheimer’s and anti-inflammatory drugs --- done by scientists from the Johns Hopkins School of Medicine, the Johns Hopkins School of Public Health and National Institute of Aging --- showed that the overall risk of AD in 1,686 participants who were taking anti-inflammatory drugs was half the risk of those not taking them.

A principal scientist in this study said that “many scientists now believe that inflammation may be an important component of the Alzheimer's disease process. The amyloid and protein plaques found in Alzheimer's patient's brains, which are hallmarks of the disease, may be indicative of an inflammatory response." (see http://www.alzheimers.org/nianews/nianews10.html)

While caution on the long-term use of anti-inflammatory drugs was indicated due to serious side effects (such as peptic ulcers and impaired kidney function), what this comprehensive study showed is the role inflammation played in AD --- the point we seem to disagree on.

The two independent, non-profit studies I mentioned earlier, done by Japanese scientists with the Department of Pharmaceutical Molecular Biology at Tohoku University in Japan, were published in Molecular Pharmacology and Biochem. Pharmacology.

These studies were specific to an extract of the Xanthone called “gamma-mangostin” from Garcinia Mangostana (the scientific name of Mangosteen) and its effect on Prostaglandin E(2) and COX-2 enzymes which play a crucial role in inflammatory conditions.

These two studies proved that the gamma-mangostin in Mangosteen “directly inhibited” the process that leads to inflammation. The scientists concluded that gamma-mangostin, a Xanthone in the Mangosteen, "is a new useful lead compound for anti-inflammatory drug development."

You can find the abstracts of these two studies at the National Library of Medicine website:

>> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retri...t&list_uids=11754876

>> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retri...=15322259&query_hl=8

I repeat --- and agree --- with what you said: "... it is not an FDA-approved treatment". I never claimed anywhere here that it is. I’m speaking of Mangosteen as a SUPPLEMENT.

You are concerned about potential "side effects". But have you taken a closer look at the mind-boggling potential side effects of the drugs you insist “work well” as a combination drug therapy (e.g., Aricept and Namenda)? Please go to pdrhealth.com and look them up.

As well, a fast read of the posts here do indicate that they worked for some (which is great) BUT NOT FOR OTHERS. Why insist that they "work well"? In fact, I read that in some cases, they had to stop using the drugs because they in fact aggravated the patients’ condition because of the unwanted side effects.

What Coffesnob and I are merely saying is the importance of having "alternatives". If Aricept and Namenda work for some, well and good. But if not, there could be others worthy of consideration.

You said you found my statements "contemptuous" and that I’m "carpet bagging a bag of goods on this site to those who are truly in desperate need of help, hope and most of all support."

You certainly know how to try to win an "argument"... Touch a little emotion here, discredit the adversary’s intentions there...

"Good debate", you wrote.

Well, I suppose you’re seeing all this the wrong way. I’m not here to debate, much less argue with you. I made this pretty clear from the very start. Let's not take advantage of other people's emotion or attack each other in any personal way. They do nothing good but degrade the level of communication.

What "Coffesnob" and I and a few others who’ve mentioned natural supplements here as alternatives see precisely that: other options for those who obtain nothing good from conventional therapies or treatments.

Now, about the Mangosteen... Here’s what an allopathic (conventional) doctor --- board certified in both the U.S. and Canada, and with 20+ years of clinical experience --- has to say about Mangosteen and Alzheimer's:

"... Clinical experience indicates an improvement in function from using Mangosteen in those patients already being treated with drugs. An increase in goal-directed behavior (activities of daily living) and social interaction were noted.

"This is remarkable because none of the drugs on the market are capable of causing an increase in function. The best they can do is slow the inexorable progression of the disease..." ("A Doctor’s Challenge: A Mangosteen Solution", J. Frederic Templeman, M.D., Sounds Concepts, 2003)

There are testimonials about Mangosteen helping patients on a variety of health issues, including Alzheimer’s. For example, go to http://mangosteen-juice-online.com/mangosteen-testimonials.html.

Personal testimonials on Mangosteen are robust and valid evidence of its efficacy. Why? Even in RCTs (Randomized Double-Blind Controlled Trials), the gold standard in human drug trials, the principal way investigators know about the adverse effects of drugs is through anecdotal or self-report (testimonials).

As Dr. Templeman said in his book, it would be "inconsistent for doctors to arbitrarily condemn testimonials or self-reports on one hand while using them as valuable information on the other hand."

There is sufficient medical evidence by way of epidemiological studies and case studies to persuade a reasonable professional like yourself (who I never assumed to be a drug-peddler but is a nurse as you said you are elsewhere) that supplementation is beneficial.

These studies are not obscure. Neither are they ambivalent. So if a doctor or nurse like yourself choose to scoff at a food supplement like the Mangosteen, s/he does so from prejudice...

Finally, here’s what Richard Horton, M.D., editor-in-chief of the Lancet (which appears to be one of your favorite journals), wrote in an editorial:

"We must act on facts and on the most accurate interpretation of them, using the best scientific information. That does not mean that we must sit back until we have 100 percent evidence about everything. When the state of the health of the people is at stake... we should be prepared to take action to diminish those risks even when the scientific knowledge is not conclusive..."

All the best,

Flip

Flip:

Anyone who is reading these posts is prob. pulling their hair out. The post is on Namenda / Aricept. We're here to help one another, not sell goods. It's clear that I am hear not to give prejudice, bias or self important conversation but help inform the uninformed of consiquences of therapies that may not be beneficial.

It is obvious you are a professional as your response looks too perfect. You can comment any way you want about "winning arguements", twisting my words and making childish attempts at knocking my credentials. That's sad. I'm sure you'll find away to twist more words from myself and others as you are looking to prove your bias. In my eyes if you are truely not pushing a product you would have said, hey try this " " ... rather than writing a complete product outline.

Bottom line is that you are carpet bagging and I'm not trying to win an arguement but inform those reading this post of the lack of practice based and research based evidence of your claims in credible publications. Very trite. NO MATTER WHAT you say my feelings are true and I am here for the right reason and many of us on the inside know that there are people that are selling product on the board. If you are going to quote research, also make sure it is credible and you have not quoted a direct study to Alzheimer's that is peer-reviewed or collaborative between multi-centers through a cooperative study. Thus it's product sales.

Additionally comments from Horton were taken out of context he is discussing the lengthy process of clinical trials and approval. Clever of you, but moot. Once again there is no study in Alz. that is credible to support your claims, there is no support from any Alz. center or group on mangosteen to my knowledge. And further more you make any statement you want about prejudice. But there are therapies such as the usage of other supplements that I fully support because of proven clinical data from credible sources. Before you begin throwing a daggers that your realize it's specifically your statements on your product that's the issue, other herbals such as ginko have been disproven to be beneficial. For Alzheimer's disease people need to use what works and is safe. I said it before taking someone off Aricept cold turkey will result in a nasty downturn, especially to supplement it with your product.

This discussion is about Namenda / Aricept, if someone wants to discuss alternatives there is a thread called alternative therapies that can be started.

Back to Namenda / Aricept.

Flip, try as you might to paint me in a bad light. Make me look like the bad guy, but it's about defending people who have no hope and many can't get the education they need to manage this disease. It is contempteuous of you to write a product outline. As I said I'm hear b/c I am affected personally and professionally by this aweful disease. Please out of respect for the post let's get back to the discussion at hand on Namenda and Aricept, be respectful that this conversation needs to end, don't be trite and post attacks, just move on and start a new thread on mangosteen. That's your best option. This has sank below my standards of appropriate converstaion for this board.

Mim,

Ouch!

This will be brief...

Some of the operative words you've used in our "dialogue": contemptuous, carpet-bagging, twisting my words, childish attempts, clever, bad guy, bad light, attacks, move on and start a new thread, sank below my standards...

Some of the words I've used and emphasized: options, alternatives, natural supplements, Mangosteen, scientific studies, inflammation and Alzheimer's, side effects, sufficient medical evidence, pdrhealth.com, clinical experience, personal testimonials...

I apologize if you felt like being painted in a bad light or made to look like the bad guy... It's your perception, but that was not the intention.

It was a fact-filled response to your previous posts which, to put it mildly, tended to look down on those offering a different view. It's like, "I'm right and your wrong... all the time."

This is an open forum, and I offered nothing but information. Not a word on a product or brand. Just Mangosteen and its health benefits. Mangosteen is a fruit!

Louann was asking about natural supplements that can be used with Namenda and Aricept. Do you want to kick her out of this forum, too?

You bashed Coffeesnob similarly, because s/he put forth an alternative view. Homeopathy and Mangosteen are two alternatives worth looking into. You bashed both - mercilessly. Pity us both --- we're always wrong, regardless!

But don't worry. You want me out of this forum? "Just move on --- ", you say. Okay, I will.

My sincere apologies to the other members of this forum if you felt my posts have been inappropriate. I put forth nothing but information, so you'll have other options when drugs don't work for the ones you care for and love.

All the best,
Flip

I had some whopper nightmares when I first started Aricet,but after a couple of months they went away.

I was on Aricept for 4 years.Then it stopped working.I was then put on Reminyl(Razadyne now),that was 3 years ago.My Neurologist wants me on Nemenda,so I picked up the starter tritation pack today.Will start it in a day or 2.
With all the differences you are having has given me food for thought.Thanks.

quote:

Originally posted by flipit:
Mim,

Ouch!

This will be brief...

Some of the operative words you've used in our "dialogue": contemptuous, carpet-bagging, twisting my words, childish attempts, clever, bad guy, bad light, attacks, move on and start a new thread, sank below my standards...

Some of the words I've used and emphasized: options, alternatives, natural supplements, Mangosteen, scientific studies, inflammation and Alzheimer's, side effects, sufficient medical evidence, pdrhealth.com, clinical experience, personal testimonials...

I apologize if you felt like being painted in a bad light or made to look like the bad guy... It's your perception, but that was not the intention.

It was a fact-filled response to your previous posts which, to put it mildly, tended to look down on those offering a different view. It's like, "I'm right and your wrong... all the time."

This is an open forum, and I offered nothing but information. Not a word on a product or brand. Just Mangosteen and its health benefits. Mangosteen is a fruit!

Louann was asking about natural supplements that can be used with Namenda and Aricept. Do you want to kick her out of this forum, too?

You bashed Coffeesnob similarly, because s/he put forth an alternative view. Homeopathy and Mangosteen are two alternatives worth looking into. You bashed both - mercilessly. Pity us both --- we're always wrong, regardless!

But don't worry. You want me out of this forum? "Just move on --- ", you say. Okay, I will.

My sincere apologies to the other members of this forum if you felt my posts have been inappropriate. I put forth nothing but information, so you'll have other options when drugs don't work for the ones you care for and love.

All the best,
Flip

Sorry-
your being too nice.
Obviously there are people on this particular post that represent the drug companies. I am begining to see the picture more clearer. I see everyday the amount of drugs that get consumed by long term care patients on a alz floor. Most of them just sleep, most of them just have their heads hung. It makes me sad that there is such drug abuse going on-
Let me make this clear, I have said what I have said in regards to homeopathy, not because the western drugs "weren't working"-but because the choice of homeopathy is a far BETTER choice. And we all know, aricept is an EVERGREENED product, if you have any question about evergreening, go to any search engine and put in aricept and evergreening together and you will see for yourself. Meaning, the drug company never wants to lose a customer, ever so they constantly promote the long, long, long term use of their drug. Be on aricept forever, oh no-don't go off, you'll get worse!! Its all a great marketing attempt. My mother was never ever even on aricept, I just did the research as part of my constant research I do, just because she is institionalized, and of my horrible feeling about Zyprexa.
The moral of the story being....question all drugs your loved ones are getting for alz and dementia-look always for all possible modalities!! Assume the worse about drugs.

Just want to point this out: from a former post.


"Hi Dimarie:

First go get this book! ALZHEIMER'S ESSENTIALS: PRACTICAL SKILLS FOR CAREGIVERS! It will help you with this problem, a collegue recommended it and I love it. It came out last month. It will help reduce your stress, get it at carmapubs.com or any bookstore. I recommend it because it's the best I've found!

What you're mom and you all are experiencing is normal. It's a part of the process called transfer trauma and can last up to 6 weeks.

She is looking for familiarity and safety and she's out of her element. The facility, if it's good they should be keeping her busy so she doesn't make calls too often.

Also is she taking Aricept? If not she should be taking it. "

If not she should be???
by the way this is from July. I sure hope you have some nice aricept pens, t-shirts, and coffee mugs.

Coffeesnob:

I'm sorry that I have become a target for you distaste. I am not promoting or working for a drug company. But I am a clinical nurse in geriatrics, have 3 family members affected, and do work with Alzheimer's patients directly, some in LTR. I work at a leading memory impairment center known for our behavioral management strategies without medication.

I respectively point out that there are inaccuracies in your statement, about the cholinesterase inhibitor class of medications which are Aricept, Exelon, and Remynl. Let's discuss neurology and Alzheimer's 101.


Aricept is considered first line which means you prescribe it first b/c of low side effects (most common are nightmares / gi issues, because Exelon / Remynl are dual action meaning it works with two enzymes and with Acetylcholine an excitatory neurotransmitter, and two enzymes Abutylcholensesterase and Aceytlcholinestese they cause more GI issues. The reason is b/c abuytlycholensesterase lives more predominantly in the GI system. Acetylcholine is a neurochemical that is responsible for transmitting messages that cause movement, salivation, digestion, thought patterns, etc. Why cholinesterase is so important is that it regulates aceytlcholine,which is normal in the body in any healthy individual, as we age aceylcholine isn't as abundant.

In AD there is an abnormal amount of acetylcholinesterase in Alzheimer's it builds up it kills off the aceytcholine in abnormal amounts thus creating less ability for the nerve cell to transmit. When you remove any of these medications, the aceytlcholinesterase then dominates the system, getting rid of the acetylcholine as this happens a persons abilities diminish. Thus, why you see a very sharp decline and the person crashes. Many studies that are funded by NHI have shown this pattern with all of the meds, so when I recommend not taking someone off until hospice it's not about the med, it's about quality of life. I'd rather have my Dad being able to say hello, good-bye, and other small phrases than being completely Aphasic.

This is present with many diseases aside from AD, if you stop taking medications for Cancer midstream you'll see the effects, as well as in Epilepsy, Endomytriosis, Parkinson's, or AIDS. Our Central Nervous System is complex, thus why we also see aberant side effects. So is it better to have some treatment to improve quality of life or just let the person keep on deteriorating until all they are is a vegetable?

Namenda works as an N-methyl-D-aspartate antagonist, NMDA is a receptor type which helps regulate memory events / learning. In AD glutamate is affected, glutamate is the most common excitatory neurotransmitter in the body. Thus why you see combination therapy with Aricept / Namenda, which so far is the only well scientifically documented combination therapy. What's really interesting and really exciting to me is that combination therapy seems to help for about two years of ADL's and what's even more great about Namenda is that if you can't take a cholinesterase inhibitor b/c of for example, gi upset, you can take Namenda. It's all we've got Coffee. IF Exelon was approved, I'd recommend that...it's not about working for a drug company this is about therapies and common practices throughout medicine in the western and eastern world.

Namenda works well with Exelon & Razadyne,OR Aricept.

If you want my true opinion on drug companies is that I believe they over charge, they don't focus on the disease states that need the most help (Huntington's, AIDS,etc.), they focus on the ones that will make the most money. I do believe that medicine needs to take a stand to help reduce cost. I spend about 20% of my week trying to get meds at low or no cost for my patients. I do not indorse or support anyone company and infact lobby against them quite frequently. In terms of the book, I offer a resource I found helpful, I said website because they are the less expensive way to buy it as I found out. We all have limited resources as caregiver, finacially and education wise. Anything new we all share here, it maybe shared 20 times. But they are books or videos or classes. Medications don't work for ever, and I don't believe they do. But we should use them as long as we can to promote the persons abilities longer. In terms of Aricept / Exelon / Remynl when we observe a markable decrease we're adding Namenda also all of our patients take a cocktail of Vit.E (low dose), Folic Acid, Omega 3 - Fish Oil, B12 and B6 with Multi-vit. With limited behavior use of meds such as Zyprexa (eick!), prefering if absolutely needed Seraquil or Depakote. (stay away from Abilify that causes some nasty side effects)although we often treat for depression with either Lexapro or Zoloft.

Please understand Coffee that I see so much misinformation, but we don't want to give disinformation that can harm people by taking them off medications that are helping them and place them onsome kind of therapy that is unproven and could potentially cause health implications. I know we are all desperate here, all us. It's a painful disease and bottom line it tears us all apart, even me who understands the disease so well personally and professionally.

Also take a look at Snowy's posts the Rx's have helped her personally, they helped my Dad, they've helped my patients. I'm done going back and forth on the issue I believe you, me, and Flip have had ample amounts of time to debate. Please no more personal assumptions....we need to support one another.

Snowy..

I'm sorry the post is riddled with this stuff. We've tried it as well and it seems to be beneficial, although we did see an increase in diahrria in some patients.

Did you notice a difference when you switched meds? You amaze me as you're really brave to face the disease, I didn't understand until a few posts ago that you were personally affected.

What do you think you'll do with the meds as it's topical, stay on them or go off?

No,I had no problems switching from Aricept to Razadyne,as I was only off the Aricept 5 days before starting the Razadyne.
All these meds are good ones just not eveyone can take them.
But then if one doesn't work,try another.Just don't stop trying.
I was a Registered CNA for 30+ yrs.I know a bit about the medications.
I do have a friend whose hubby cannot take any of the meds.for AD so she uses herbals & they help him.

"Please understand Coffee that I see so much misinformation, but we don't want to give disinformation that can harm people by taking them off medications that are helping them and place them onsome kind of therapy that is unproven and could potentially cause health implications. I know we are all desperate here, all us. It's a painful disease and bottom line it tears us all apart, even me who understands the disease so well personally and professionally. "

This is where-you are making an assumption. You do not know. You are constantly suggesting these drugs, ( I notice you did not address the EVERGREENING)- you have not personally seen any effect that homeopathics can have on a person nearing final stages. Well, I have. Thats why I can say for clearly, and positively-that they work. Your training does not allow you even a mm of space, to even begin to understand how other therapies can work, either vibrational or homeopathically. I suggest you get a book on homeopathy as it is widely PROVEN, and used all over Europe, the only reason we do not have many MD's using it here is simple, they are owned by the drug companies. The MD's that is. Please refrain from constantly stating that its mis-information because its not. I have heard from teams of Geriatric MD"S that many of the drugs you are constantly promoting are not for people in final stages, or in facilities. That is where you are promoting misinformation.
While I agree with you that we must stick together, I must ask that you quit remarking that only drugs work. That is just purely untrue. I have seen my mother personally get better, not because of anything, other than getting off the DOPE. And being on Homeopathics for over 2 months with great success. With no side effects at all. They have even worked at sundowning time, and bedtime. More people need to be aware that these modalities exist, and they are approved by the FDA, and can be used institionallly, as they are sealed. The cost is fractional next to drugs.
Drugs may be right for some people in some conditions, but there is always the ability to try other modalities. This is information every one should have.

Mim, thank you for your replies.

I have been waiting to reply to see if, in addition to Aricept, titrating Namenda in 5mg increases each week for 4 weeks helped my mother's situation. The visiting psych nurse thought see saw improvement, while I saw the opposite. When the 4th week started, 20mg per day, she was like a deer in the headlights. For the first time, she asked me who I was, and she did not recognize my wife. The Namenda was cut back to 15mg per day. Risperdal, Lexapro, Trazodone, and Klonopin are still being given for paranoia, depression, and anxiety. She is now exhibiting despair, lack of inhibitions, and constantly questioning "what should I do now?". I quess that I am asking the same question.

Additionally, her very short term memory is virtually absent. I will receive five phone calls in 20 minutes asking the same question. Even when I am visiting, the same question is repeatedly asked. It seems as if nothing is being processed and retained.

When I question the Risperdal, the response is that it is needed for paranoia control, and that there is no better alternative. If I demand that the Risperdal be removed, do I risk the return of paranoia? Are Namenda and Lexapro causing more harm than good? If I ask that they be removed, and she becomes worse, I will be the cause and I am not the expert.

All the medical personnel say that the geripsych doc is THE AD expert, and that a neurodoc would not be a better choice.

Too many questions, a lot of medications, and too few results. Frustration is settin in.

Indo:

Looking at your post my first thought is that the Traznadone and particularly the Klonopin are causing the issue. There can polypharmacy (too many meds working against one another) causing the issue as well.

Some geripsych's do understand dementia and some don't. You have to inquire on their background, my personal preference is a neurologist that specializes. Often times psychs prescribe heavy psychotropic drugs such as Klonopin. I'd investigate using seraquil, or depakote as resperidol we've only used for auditory hallucinations / delusions. My father suffers from the same issues, depakote worked really well.

In terms of Namenda we've seen some individuals become more agigitated, my dad was like that so we d/c it and kept on him on his cholenesterase inhibitor.Lexapro I believe is a good choice as it's "lighter" than zoloft. Although Paxil is nasty, a "dirty" drug in the elderly.

As well, if you can locate a social model day care, if she is paranoid validate her feeling and sympathize. This could help. I'd also go on Amazon and pick up a book or two, just search Alzheimer's and a good book should pop up.

If you let me know what state you are in I'll be happy to see if there is a neurologist I could recommend to you.

Coffee: Thank you for your response. Posted September 03, 2005 02:21 PM - you'll see my response to drug companies attempts and my disagreement with what they do. As well, not to be coy, but the FDA doesn't approve vitamin therapies.

Coffee, it's not about believing you, I just don't agree and you don't agree with me. That's okay, we can agree to disagree. This is what makes America great, we can voice our beliefs. Maybe in time my opinion will change or maybe yours will. Going back and forth won't make that happen. I do see your passion, your belief and if it works for you I believe that's okay too.

Keep us posted on how the homeopathics are working for your loved one.

quote:

Originally posted by Mim:
Coffee: Thank you for your response. Posted September 03, 2005 02:21 PM - you'll see my response to drug companies attempts and my disagreement with what they do. As well, not to be coy, but the FDA doesn't approve vitamin therapies.

Coffee, it's not about believing you, I just don't agree and you don't agree with me. That's okay, we can agree to disagree. This is what makes America great, we can voice our beliefs. Maybe in time my opinion will change or maybe yours will. Going back and forth won't make that happen. I do see your passion, your belief and if it works for you I believe that's okay too.

Keep us posted on how the homeopathics are working for your loved one.

Mim ...
once again, let me unrudely correct you. These are not vitamin therapies- they are homeopathic. ANd yes they are absolutely approved by the FDA Pharmeucopia, and have been for years. Instead of continuing to give the wrong information and call homeopathy .."vitamins" go do your own research- you will see that these products pass and adhere to FDA regulations. Homeopathy is much different as it was developed by a doctor- Dr. Hahnemann. A good book for you to read -since you are in the profession would be The Healing Art of Homeopathy by Dr. Samuel Hahnemann.
And mim...America is not so great right now. I am not sure if you missed something, but we are engaged in a illegal war, not to mention thousands have died in a hurricane, and are continuing to die, and most of the heads of our government have been on vacation, shopping for shoes in NYC, and busy with campaigns. And we cannot voice our beliefs all that well-you have to stand and block like a road to a ranch in Texas to even maybe get a little attention that then is minimized by the media.
And mim....did you go to google and put in Aricept and Evergreening....I have yet to see any response to that from you. Not to be coy..
peace.