After some digging I found the website for the breakthrough Alzheimer's treatment using Enbrel, an anti-TNF, inflammation inhibiting drug. The clinic is based out of the UCLA campus and accepts appointments, consultations, and physician referrals. I'll be calling them Monday morning to ask about their requirements for a patient to be treated there. I'll keep everyone posted. In the meantime you can check out a link to a .pdf file from their website outlining the effectiveness of this new treatment. http://www.nrimed.com/INR.AD8.pdf

Hi Gals/Guys,

I just wanted to update everyone on this Enbrel treatment for AD. I felt obligated to follow-up on this because even though the study only speaks of one patient's improvements I do think you have to consider that versus the inevitable alternative. I called the Institute of Neurological Research based of out the UCLA campus today. This Dr. Tobinick's (the study's author) place of practice, and he is also medical director of this privately held institute. I wasn't able to get many answers out of the receptionists that pick up the phone, but I can tell you the feeling I got was that they were more savvy in the art of telemarketing than they are in the knowledge of this "Tobinick Method" of Alzhiemer's treatment. In order to ask a physician any questions or determine if your loved one is eligible for this treatment of perispinal Enebril administration you must first pay a $600 telephone consultation fee to speak with Dr. Tobinick. Following the consultation you are to fly (or drive) to Los Angeles for a medical evalution of your loved one (xrays, cognitive exams, blood workup, etc.), and the cost for that first physical is $1500. The same day the first treatment is started, and followed by 6 additional treatments over a 6 week period. The cost per treatment is $600.

I've done some research on other forums and have found these numbers to be somewhat consistent across the board with $200-$300 discrepancies throughout. The patient usually needs monthly treatments after that to maintain the positive results seen after the initial 6 week treatments. After reporting this to my grandfather it seems he is interested in pursuing this. I don't blame him. When someone gives you hope for a disease in which there is no cure, you have to give it a shot. There are side-effects from this treatment, serious side-effects, and in one case a patient even died (although the cause was never determined). The only redish/yellowish flag that raises for me is the fact that Dr. Tobinick didn't report his findings from his other 16 patients that he tested. Furthermore, he didn't report a follow-up on the one patient he writes about. The study he conducted was not controlled, and there is no way of knowing whether the effects are from the drug, the route of administration, placebo (although I doubt that one), or any other factors. Lastly, he isn't a neurologist at all, he's actually a dermatologist, and an internist, and a volunteer professor with UCLA, the institute that denies any affiliation with this study. The drug manufacturer has also decided not to pursue any further research with this drug for AD use, which to me sends up a billboard-sized question mark ? After reading through this long, detailed analysis of this treatment by a few experts and critics http://www.alzforum.org/new/detail.asp?id=1738 I am not convinced that administration of Enbrel is a "cure it all" dream potion for our loved ones. An additional study found that the Enbrel does not cross into the brain tissue, but rather only the cerebrospinal fluid. On the other hand, a study conducted by a Duke researcher found that administration of subcutaneous injections for rheumatoid arthritis led to improvements in depression and other brain related disorders. So, obviously we can't make an informed decision about what the best course of treatment would be considering the lack of evidence and thorough report on this subject. All I can say is that after reading forum posts from caregivers of those that have already received the first few treatments, I want to take my grandmother there on the next flight out.

If anyone decides to pursue this please fill us in with updates on your loved one's status, and I will do the same (depending on my grandfather's final decision). The number for INR (310) 824-6199.

Wow, Aitan, thanks for all of that info., that was a lot of work on your part. Where did you read posts from people whose LO's received the treatment, I would love to read those?

I am anxiously waiting to hear back about your grandmother should your grandfather want to persue this treatment.

~Kelly~

Sorry I should have remembered to post that link as a reference. I read descriptions of two caregivers who's LOs are going through the treatment now. It gives some insight, but I have emailed one of them to get some more information on current status as these posts are not up-to-date. http://alzheimers.infopop.cc/eve/forums ... 4081064272

Hello All,

After deliberation the verdict is in and my grandfather has decided (along with my family) to pursue the Enbrel intraspinal treatment with Dr. Tobinick for my grandmother. We have a phone conference tomorrow at 4 pm ET to discuss the procedure and eligibility with the doctor himself. I would greatly appreciate everyone's comments on this, and if you have any questions you would like to have answered please list them here so that I can ask Dr. Tobinick.

~Aitan~

Aitan about what stage would you say you grandmother was?

I am anxiously waiting to hear what you find out.

Without formal testing of course, I would have to place my grandmother in a solid stage 6, some days borderline 5, and somedays hints of stage 7. According to the study individuals with later stages were tested as well, but their results were not as remarkable as earlier stage patients.

Aitan,

I hope and pray that this will help your grandmother in a remarkable way. Keep us posted.

~Kelly~

Sorry it took so long for an update, I wanted to make sure I had all the information before I posted. My grandfather decided to pay the telephone consultation fee, which allowed us to speak to this Dr. Tobinick for approximately an hour. After a medical history interview by another physician Dr. Tobinick came on the line and briefly introduced himself. I started asking away with the questions and basically this is what I got out of this conversation. There are very few things that would make an AD patient ineligible for this treatment. One of them is an eye cancer which my grandmother did have. Being that this drug is used off-label, and not approved for AD and spinal administration Dr. Tobinick says that he can't be sure how exactly this would react and could potentially bring back the cancer. He is willing to allow her to receive it with a signed consent from an ophthalmologist, which will never happen because this isn't an FDA approved treatment and no one would take on that liability (well except Dr. Tobinick). The other issue for my grandmother is that she would have to move to California being that the treatments are once a week for the rest of her life! Now, being that this isn't an option I asked Dr. Tobinick what if she only comes for one or two treatments and then comes back every few months for a "booster" type shot? His response was no, once we stopped giving the patients the treatment they went back to the way they were. This is contradictory to what he published in his paper on the Enbrel administration. In the paper he stated that the one 80-something year old male had continued to improve after the first shot. The first treatment is $5,000 and then the price goes down to $600 a week plus $180 for the medication each week. He says that the improvements are subtle. I'll let everyone judge for themselves based on this information and the research out there, however, I'd just like to tell you that in my opinion there is no justification for taking so much money for this treatment and definitely not $600 for a telephone consultation. This private research group is looking to cash-in on a finding that has not been scientifically proven, but has shown some effectiveness. Lastly, Dr. Tobinick says that they are working with physicians and research centers around the nation to start trials on this method of treatment. No additional information on locations or starting dates. Sorry if this disappointed anyone, but I thought I should share all this before I let everyone contribute to some doctor's retirement fund.

It really does sound like someone is building his own retirement fune.

All the information you received from your call should be in the research information. All they're after is the original $600 for taking your medical history. I doubt very much if there are that many people willing to or even finacially able to pay $5000 for one treatment and $780 a week for the rest of their life.

Thanks for letting us know what you found out.

Thanks for sharing all that Aitan.
How very disappointing. It's horrible how people will
try to cash in on other people's desperate situations.
There must be an extra warm spot in hell for them.
On a brighter note, how great it is that we are able
to share info like this with each other and anyone
else who pops in. The great equalizer--the internet--
certainly has its dangers, but it also can really save
people time, heartache, and money if they know how
to do some of their own basic research on stuff like
this.
Thanks again for sharing in such detail.
Is your Grandfather still searching for a facility of
some sort for your Grandmother or will she be
staying home with him? Not to pry. Just wondering,
and hoping things are going OK.
Carol

I agree with what you said about internet serving a dual propose depending on who's behind the screen. So my grandfather is looking at this facility that seems like a good place. I haven't been to visit yet, but I think he wants to start her with the daycare program there to get her acclimated, and then eventually when she really needs to be admitted then she will already be comfortable there. She's a tough person to transition into this because she is still very lucid and understands, but still very much needs around the clock care. I'll keep everyone posted.

Another bubble burst....in talking with my brother, we are going to wait until our appointment in May with the neuro to talk to him about this...our neuro has done a lot of bona-fide research in Parkinson's and I'm sure he probably came to the same conclusion you did, Aitan.

As expensive as that is, I don't think it's unreasonable. This is cutting-edge medicine, and experimental treatments are never cheap. He's obliged to charge a great deal because he's taking on a great liability, and the possibility of lawsuits and possible loss of his practice is very real because the treatment is not proven.

With that said, is $3,500/month a fair price for subtle improvements? That money can buy a lot of quality of life in other ways! I'd rather do my caregiving on a cruise ship or something...

no, that is totally unreasonable. this isn't a new medicine. this guy is simply using an existing medicine that is already out there and already FDA approved. he is using it "off-label" - for purposes it's not yet approved for. he's injecting it in a special place in the back.

what is shady is that if he was a legitimate scientist and wanting to help all of us out he would be sharing his discovery with the world so others could research it as well and try it out. what he's tried to patent is exactly where this injection goes. that ;is completely shady. this is a guy that is just out for himself and preying on all of us who are desperate to help our loved ones.

there is no reason he cannot post his method so others can do it. the expense is him scamming people - not because of the medicine or anything like that. $600 for a bogus unnecessary initial consult? that's not ethical? if he posted how to do it, then our local doctor's could help us try this out with our loved ones at a FRACTION of what he is charging and w/o the need to move to LA or pay exorbitant fees.

TOTAL SCAM.

btw...this doctor was sanctioned in the past for shady ethical violations - google him and you'll see.