Just read about Axona, a new product that is described as a medical food beneficial for AD patients. I know that there has been some discussion of it under the Coconut Oil thread. I find it so amazing that this product has been flying under the radar (at least my radar), while all the drugs that are being developed get tons of press. It seems that in Florida, there have been articles that mentioned it because of a Dr. Newport, who has recommended coconut oil for AD patients. My question is, how many of you have run Axona by your LO's doctors, and what was their reaction? I emailed my DH's doctor yesterday, haven't had a response yet. Anyone interested in reading about Axona can go to the Accera Pharma website. If you haven't checked the Coconut Oil thread, there is a wealth of info. and Sunshyne has posted an incredible amount of research on the subject.
In the clinical trials, Axona showed improvement in AD patients without the APOE4 gene and those with the gene remained cognitively stable. Does anyone know, if an individual has the EOAD gene, is it also possible to have the APOE4 as well? (DH has never had genetic testing, so it's a guess as to his genetic makeup).
I think it would be possible but very rare to have one of the EOAD genes and an APOE mutation. My husband has one of the eFad mutations but tested negitive for the APOE gene type when he enrolled in the BAP phase III trial. I know of many poeple with young onset that are APOE+, eFad mutations are extremely rare at 1% of the total AD population.
Thanks for the info on Axona- I will look into it.
Marilyn, I would die of shock if any doctor has heard about Axona yet. I told Sam (Dr Henderson) that they need a new PR firm, since the coconut doctor has gotten a lot more publicity than they have! He agreed ... but I suspect they probably don't even have one yet. Accera is a teeny-tiny company operating on a shoestring until very recently, when they got a big infusion of cash to launch the product.
Where did you read about it? Are they finally starting to advertise?
First of all, were you a medical researcher in your former life? I know I could probably find it on the thread about what we did before AD, but I've been wondering. I read about it on Alzheimers or Dementia Weekly that arrived yesterday by email. Sign up, if you haven't already. I guess I should have realized that treatments being explored by big pharma will get all the publicity--it all does come down to the buck! I'll let you know what Steve's doctor's response is. He usually gets back to me immediately--this time he hasn't--maybe he's not familiar with it and researching before he responds.
Marilyn, scientist, focusing on interdisciplinary technology development. I've worked in a lot of areas, most recently developing tools that can be used in drug development. My father was a doctor, so I grew up "speaking the lingo."
Hmmm ... I get the Alz Daily News, maybe they will finally get around to discovering it. Then again, maybe not. I haven't been terribly impressed by the calibre of their newsletter.
I'll try the weekly newsletters, thanks. I am delighted that Accera is FINALLY getting some attention!!!
I'm also glad they're finally getting some attention, Sunshyne. Is Axona available yet? If it is, I want to contact our doctor and no, they hadn't heard of it when I mentioned it to them last month. We're using the MCT and coconut oil until we can get their product.
Our Dr. doesn't know anything about the coconut oil. Told me to give it a try (1 Tablespoon a day) and get back to him. Where do I buy it? At a supplement store?
I also would like to try Axona. Does anyone know if you use that with Namenda & Exelon or in place of these drugs or what?
It sounds as if the patient will stay on their AD meds--the article states "Axona will have no significant interaction with commonly prescribed AD medications". Anyone wanting to read the whole thing, go to the Alzheimer's Weekly website and it is on the current post (week of January 4 - January 10). It says 2008 but they mean 2009. I guess caregiver's dementia extends even to those who write about AD! Somewhere on the web I read that it will be available in March 2009. That's why I'm starting now to try to bring this to Steve's doctor's attention, so he has time to get up to speed on it. Strange and sad that we have to teach them--this is a neuropsychiatrist at Johns Hopkins' Memory Clinic, a good doctor, but still...Has there ever been a thread on caregivers teaching physicians about AD?
Yes there has. Our Marsh is an MD and has given classes and we have discussed this at length. It is uncomfortable knowing that we sometimes know more about dementia that the docs. I'll try to find the thread.
Mawzy, use MCT oil, it's better for you than coconut oil, and it's also closer in composition to Axona. I ordered online through Amazon.com this time. The company I previously used screwed up my second order, I'm really honked... but it turns out I can get the same product for an even lower price, and this company has a WOW reputation on Amazon:
This is "MCT Gold" by Ultimate Nutrition, sold through AllStarHealth.com
(There are several other companies listed on Amazon.com that sell exactly the same thing, but mostly at a higher price.)
Start off with a teaspoon and then work your way up. Too much all at once can cause cramps and diarrhea.
Axona was tested on patients who were taking Namenda and/or a cholinesterase inhibitor such as Exelon, and improved their cognitive function on top of the benefits they were getting from the conventional AD meds.
I am still learning about all this (dh just diagnosed in July). He is on Aricept and Namenda. Should we try the MCT oil also? I am sure I am missing something in this discussion - sorry for being a bit late and slow. I am still trying to understand a definate diagnosis from the dr. I guess I didn't listen very well - or couldn't think up the right questions during the appt.
Martha, the drug trials for Axonia included people already on memory drugs. There were no bad interactions. I'm waiting for the actual Axonia to come out and I'll pass that on to my husband's doctor when it does. For several reasons I don't think I can get him to take the MCT oil itself. So I'm waiting.
I also ordered MCT oil from Allstarhealth.com. Their prices and service are great. Next time, I will order from Amazon through Joan's web site. I had already been giving coconut oil but switched to MCT oil after reading Sunshyne's research. I'm starting with a teaspoon twice a day and will try to work up to two tablespoons. I'm having trouble finding ways to give it. The coconut oil was easier. We used it in oatmeal, hot chocolate, etc.
Bill's facility was not good about giving him the coconut oil so I brought it home and am using it instead of soap in the shower. Skin is great. (just for the curious-I am using soap in appropriate places)
Martha, yes, the MCT oil works by a very different mechanism, and it can be taken with the "conventional" AD meds and patients on both are helped more than patients on either one alone. Also, from everything I've read, it should help patients with Lewy body dementia or Parkinson's dementia, too, and patients who have developed myoclonus.
Starling, I don't "give" my husband MCT oil ... I put it in his food. It really is tasteless. I spread it on bread before I spread the peanut butter, I mix it in soup, I toss it in his salad before I add the regular dressing, I drizzle it on pasta, I stir it into low-fat yogurt, I add it to eggs before scrambling, you name it. You could mix it with oatmeal, too, although the coconut oil does add a nice flavor (also in hot chocolate, he loved that, so I am still giving him a little coconut cocoa from time to time). I've been mixing the MCT Fuel (orange-flavored emulsion) with orange juice at breakfast.
bluedaze, thank you for the details on your shower habits. Most enlightening.
Starling, a "Yes, But" simply means we need to get more creative ... ! What is life without a challenge?
Do you serve yourself before he fixes his plate? Can you mix it into just part of a dish and help yourself to the untreated part?
Or might he be like my husband, fully aware that I'm adding something to his food and not objecting because I've told him it's good for him ... ? (Too easy, I know.)
Sunshyne--I'd like your take on this. I discussed Axona with the nurse practitioner/social worker that I am co-facilitating a support group with. She's very knowlegeable on the medical side of the disease as well as the social impact. She told me not to get too excited about this product yet--that it depends on who conducted the clinical trials, that the FDA approval doesn't necessarily mean all you would think it should, etc. Do you know more about how the trials were conducted, who paid for them, etc. It is my understanding that clinical trials are usually funded by the drug companies, so even if Accera did fund this one, how would that be any different I think the question was whether Accera hired someone to do the trial. She reads this site, so maybe she'll chime in.
I don't think the Axona is going to be a "cure", but am hopeful it will improve my DH in the short term. I have seen improvement with the coconut oil and MCT oil even though it is not a cure and am excited for most any new product coming out that shows some promise. I can now leave DH for 90 minutes at a time and I couldn't before the coconut oil. For me, that is a great improvement but I never know how long it will last.
Marilyn, you may not get excited about Axora, but I have been trying MCT oils for a few weeks and I AM excited. Whether or not Axora will give any more improvement than what I have seen with just the MCT oils, I do not know--but I do know that I will be staying with either the MCT oils or Axora when it is available. I know that it is important to know who funded the studies, but if Accera had not funded it, who would--it would never be done.
My DH will take or eat anything if I tell him it's good for him....especially if I tell him it will help his memory. Sunshyne, thanks for the different ways to use the MCT oil. Why didn't I think of trying some of those things? This may turn out to be easier to use than coconut oil.
I made a recipe of baked oatmeal and put 1/2c. of MCT oil in it. That is about 6 servings of oatmeal. I think the coconut oil is easier for me because I can spread it on a slice of bread and fold it in half, but I am working with the MCT oil too. My husband is also able now to turn on the water in the shower and shower and wash his hair and dress except I have to help him with his t-shirt. I hope the Axora will work as well and be in a capsule form. He is also interested in anything that will improve his memory.
I thought MCT was coconut oil. I'm getting confused. How much MCT do you add to the food? Is it better than the coconut oil? What's the difference? Thanks for your help.
And where do you get the Axona? Is it a prescription or an OTC?
Mawzy, you can find a lot of scientific explanation about coconut oil and MCT under the coconut oil thread, much of which is over my head, but they are different. The coconut oil is a solid and you can spread it on bread like butter and it has a coconut flavor. The MCT is a liquid oil and you can use it in place of cooking oil or drizzle on some foods, etc. The one I have has no flavor but some have a orange flavor. The Axona will be available by prescription in a couple months and can be used with other meds. The Axona is going to be a powder? and we will use it in place of the other 2 oils listed above. The coconut oil has more fats that are not as good for you, but for me, it is easier to give him it in place of butter. I spread up to a tablespoon on a slice of bread a day and use some MCT oil about the same whenever I can.
That said, several of us have been using the MCT oil and Coconut oil with definite improvements in the DH behavior and we are pretty excited about the improvements and we are looking forward to the Axona hoping it will continue the improvements or even do better. You can buy the coconut oil at a Health Food Store or order in over the Internet as well as the coconut oil. I recommend you give one of them a try as soon as possiblle and let us know if he shows improvement. Then you can try the Axona after it is for sale. Good Lluck.
Mawzy, MCT means "medium chain triglycerides". These are a class of fatty acid. MCT oil contains two types of MCTs, caprylic acid and capric acid. Coconut oil contains small amounts of these, plus large amounts of saturated fats that are not heart-healthy.
Now, fats do not mix well with water, as we all know, and tend to form big globules (think lava lamp). So when we eat fats, we may not absorb them well. To maximize their absorption, fatty acids can be "emulsified", that is, mixed with other compounds that help the fats be mixed into water-based products as extremely small droplets, too small for the eye to see.
"MCT Fuel" from Twin Labs is MCT oil that is emulsified. It's orange-flavored ... so they say. It is pretty palatable mixed with orange juice. (I'm not a big fan of artificial orange flavor. My husband loves the juice concoction.)
Axona contains caprylic acid that is emulsified. It also contains various additives to make the caprylic acid more effective. I'm not sure exactly which additives ... I could only get hints from one of their most recent patent applications.
Now. How much you give your spouse depends on which product you are using.
Accera was giving patients 14 grams of emulsified caprylic acid per day in their clinical trials. Assuming that the different fatty acids in the different products are digested, absorbed, and metabolized the same way, you would give:
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 that lauric acid and myristic acid are entirely transformed into ketone bodies ... but they're not.
With ANY of these, start off a little slowly. Until the body gets used to MCTs, a large amount can cause cramps and diarrhea.
I just bugged Accera again, to see if they have any data on using their product to treat Parkinson's, or have any experience in treating myoclonus. (No and no.) They still say that their prescription-only Axona will be available in the first quarter of 2009.
Lori, I don't know how much good that would do. It may help suspend the MCT oil a bit, but to get a true emulsion you need a way to generate the tiny droplets. Commercial production of lipid injectable emulsions usually involves homogenization during which a concentrated mixture of oil, water, and emulsifier is forced through a small orifice at high pressures, which yields a submicron-sized dispersion of lipid droplets in water. (These emulsions can be dried into powders that can later be reconstituted, if the right components are used, which is what Accera is doing.)
Marilyn, sorry, took a while to get around to looking for the answer to your question.
The clinical trials for Ketasyn (Axona's original name) were conducted by a number of CROs (contract research organizations) that specialize in conducting clinical trials for neurological disorders (e.g., Meridien Research and the Baumel-Eisner Neuromedical Institute.)
Accera paid for the trials, of course. Who else?
And while I'll grant you that an FDA approval doesn't guarantee that a med will have instant success at curing every patient, to me the approval is very meaningful -- an objective third party, comprising a panel of experts, evaluated the clinical trial protocol, the data, and their interpretation, and agreed that the trials were properly designed and the results are meaningful. It's a lot better than me trying to figure out on my own whether a treatment might actually have some potential.
And after all, how many products have received approval from the FDA for treating AD?
Thanks much! I'll get some and keep you posted. I'm anxious to try the Axona. You say that's a prescription coming out in the spring? I know his dr will prescribe it. He's pretty good to us.
Lori2, how long has your DH been using MCT oil? I have been giving DH coconut oil for about 4 or 5 weeks and just started the MCT oil. There is definitely a difference and he even seems to feel better. We always wonder if it's really working or just the ups and downs of this disease but when they have more and more of the up days and even other people notice, it's a good thing.
Martha, as far as I know, Accera has only tested a single, daily dose.
Maybe they know more about the pharmacokinetics than I've seen. To me, it just makes sense to try to keep the supply of ketone bodies constant. Maybe the absorption/digestion/metabolism is such that a single daily dose does that -- I don't know.
But for us, I've been giving my husband more than the 14 grams a day, now that we've ramped up, and I've been spreading it across three doses, one with every meal. I give ~2.5 Tbsp Fuel with orange juice at breakfast, and another ~1.5 Tbsp of MCT oil with lunch and again with dinner.
Gosh, Sunshyne, I am lucky to do 1 T. of the MCT or coconut oil a day one time. He is much improved with that, I don't know what would happen if I could ramp up to as much as you are doing. I will work on it. Martha P keep us posted. I showed improvement in 2 days. Not all areas, just some.
Mary, that's hard to answer. His symptoms bounce around at any time, but they are particularly sensitive to stress, and we've had quite a bit of that.
I posted somewhere -- probably the coconut oil thread (yep, on the 6th page) -- about an exam he had a month after we'd started (slowly, on coconut oil). He did surprisingly well. I can't give you MMSE scores, his doctors don't do anything that simple.
At that time, his beloved geriatric cat had just gone through a liver biopsy, and he, himself had been to the dermatologist and had an ugly sore next to his eye from having yet another actinic keratosis frozen off.
Since then, we went through the cat getting even worse, lung cancer diagnosis, various treatments to try to keep her comfortable, her relentless decline and finally euthanasia ... accompanied by my being a basket case the entire time. Followed, as y'all know in exhaustive detail, by the hunt for a new cat, and trying to adapt to two delightful -- but very rambunctious and confusing -- new members of the household. Getting ready for them also meant making some changes to where we were keeping things, and changes to his surroundings is something he doesn't react well to. And we continue to have some nastiness from creditors of my defunct company who think hassling me is fun even though it's very much against the law, although (knock on wood) the bulk of that has subsided.
So ... as far as I can tell, it's been a mix. I'd say, on the average, his vocabulary is improving, and his conversation is a bit more sophisticated. He has remembered things that have startled me -- like asking me out of the blue if I'd started writing a book, which is something I haven't mentioned in months -- and is starting to show some interest in chores that he hasn't done in a long time. He had been getting a little forgetful about bathing, especially about washing his hair or brushing his teeth -- that's starting to get a bit better again. It feels as if his short-term memory is a little better -- I can ask him to do a couple of things at one time and sometimes he'll remember both of them long enough to do them (!!!) He's a little more willing to make a choice between two alternatives. But on the down side, he's getting a little stubborn about wearing one of the same two sweatshirts, even when it's too hot outside. It seems as if maybe he's having a little more trouble getting dressed by himself. And I may be wrong, but I think he's having just a bit more trouble moving around. At least, he seems a tiny bit more wobbly to me.
What's due to MCT oil, what's due to stress, what's due to progression of the disease, what's due to old age, what's due to my imagination ... who knows. I AM sure the MCT oil hasn't made him any worse! And I intend to keep on giving it to him.