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-   Traumatic Brain Injury and Post Concussion Syndrome (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/)
-   -   Etanercept (brand name: Enbrel) (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/206860-etanercept-brand-name-enbrel.html)

willgardner 07-15-2014 04:12 PM

Etanercept (brand name: Enbrel)
 
just read an article posted by a member in the forum: http://articles.sun-sentinel.com/201...c-brain-injury

Correct me if I am wrong, but it seems like it's FDA approved since the article was written. has anyone tried this or knows more about this?

anon1028 07-15-2014 04:17 PM

Tryinge to find more about this procedure. 1 poster I don't know if it was you said that the cost had gone from 5000 to 10,000 which is disgusting but what can yoju do. I searched google and haven't seen many updates in the past few years. I had a vision test that indicated damage to the cerebellum brain stem and thalamus. I dont know if the injection would help my particular problems but I would love to find out.

willgardner 07-15-2014 04:28 PM

I thought the cost would go down since the FDA approval!!!! that is outrageous. Also trying to find more about it. let's please keep each other posted on this thread.

anon1028 07-15-2014 04:36 PM

I am going to do my research and will let you know either by sending you a private message or putting it in the brain injury room. I have also read of disappointments where a woman with alzheimerrs spent a hundred and fifty thousand dollars on treatments that didn't work. But there seem to be reputable studies done that show it helps very much. if I had 10,000 laying around I would get it done. I might call and find out if it helps with my specific problems and if it does I will start saving for my disability check for it. I don't understand how this procedure affects so many different head problems. I thought the problems stemmed from damaged cells so I'm not sure why getting rid of inlammation would instantly heal people but I'm willing to find out. there was a very damaging article in a publication called science based medicine that you might want to read

Mark in Idaho 07-15-2014 08:18 PM

I did not see anywhere where it said it is FDA approved. FDA approval would usually come through the manufacturer. There is no reason the manufacturer would spend the millions needed to get approval for this protocol. The market is just too small. The protocol is 25 mgs once, maybe twice.

The primary use of etanercept is for autoimmune diseases at 50 mgs per week at a cost of $16,000 per year. That is $153 per 25 mg dose.

I doubt insurance companies will ever pay for it. It is too experimental. The cost benefit ratio is too high. If it came down to below $1000, they may change their position.

A few lawsuits against the manufacturer for bad side effects could end the program and send it off-shore.

anon1028 07-15-2014 08:23 PM

i saw those lawsuits online mark. I think you are right. also the clinical studies that were done were performed on rats right after their brain injury not up to 10 years plus. I have read many times that the effect of a brain injury last for decades and a lot of that is inflammation and free radicals. I guess stopping that would help and maybe without the inflammation the brain could heal better. there must be a cheaper way to stop the inflammation process.

Mark in Idaho 07-15-2014 09:08 PM

Part of the damage from a brain injury is lost brain cells. Brain cells do not regenerate quickly if they do at all, nor do they quickly re-establish pathways that originally took years to establish the first time.

anon1028 07-15-2014 09:10 PM

mark you are absolutely right and I don't see how even getting rid of inflammation instantly can make people get up and walk or regenerate lost brain cells or get rid of tau in alzheimers patients

Mark in Idaho 07-15-2014 10:06 PM

The protocol is only helpful with a select group of people. I believe many diagnosed with Alzheimer's actually have other forms of dementia. My father was told he had Alzheimer's but his dementia started 30 years prior to his death. I believe he had ischemic dementia from decades of Central Sleep Apnea.

I know others with AD diagnoses who have a history of concussions. They say that people with a history of multiple concussion have an 18 fold increased risk of AD. I think they have an increased likelihood of a misdiagnosis of AD.

So, the few who improved likely did not have AD but rather a different malady.

Tom from Queens 07-16-2014 06:39 PM

It looks like the drug company was interested in seeing the effects of etanercept on Alzheimer's. A study was just completed, but the results have not been published:

http://www.clinicaltrials.gov/ct2/show/NCT01068353

In the study that was reported in the Sun-Sentinel, only 12 out of 629 patients had TBI. Motor impairment and spasticity in the TBI patients were improved; there was no indication that cognition was improved. I do not have access to the full paper, but you can read the abstract here:

http://www.ncbi.nlm.nih.gov/pubmed/23100196

I would love to read the full paper.

anon1028 07-16-2014 06:45 PM

thanks for the information.I don't think that will help with the symptoms I have. But I hoping to being useful for others

anon1028 07-16-2014 06:59 PM

actually it looks like the study was completed and it seems that the university that did it is a wholly owned subsidiary of Pfizer. I am far from ready to invest $1000s seeing as how I don't see how it can repair the damaged parts of my brain that are causing my problems.it doesn't seem to treat chronic pain or sleep problems or tinnitus. it also states for the clinical trials are necessary. I also think I read somewhere that just taking the medication internally will result and some relief of symptoms.

RickyBobby 07-16-2014 10:21 PM

http://www.tobinick.com/videos/rapid...-brain-injury/

anon1028 07-16-2014 10:31 PM

I don't understand this whole patent thing. what if someone had patented the first epidural. that means that no one could ever give it except him? what if it becomes fda approved? I can't see that happening before 10 years if eternacept is allowed in the country after the lawsuits. there is some evidence that taking eternacept regularly can help the injured brain. I don't know what to think

RickyBobby 07-16-2014 11:08 PM

What's patented is the delivery method of the injection.........they found a way to bypass the blood/brain barrier!
N now it's a monopoly, but if this gets FDA approved 10 years from now.....the government will find a way around the patent....it's all about the $!
It's always about the $!

N remember this isin't a cure for Alzheimer's ......it's a treatment to slow the progressing n in some cases reverse it......but as it's a progressing decease, it'll need treatment every so often...

Stroke n TBI patients only need 1 shot to take down the inflammation in the injured areas....
I just wonder if as time passes these areas won't become re-inflamated?

I did meet a patient last year that received the shots several years a
go after his stroke n he hasn't lost any benefits he gained from the injections

anon1028 07-16-2014 11:14 PM

Quote:

Originally Posted by RickyBobby (Post 1082716)
What's patented is the delivery method of the injection.........they found a way to bypass the blood/brain barrier!
N now it's a monopoly, but if this gets FDA approved 10 years from now.....the government will find a way around the patent....it's all about the $!
It's always about the $!

N remember this isin't a cure for Alzheimer's ......it's a treatment to slow the progressing n in some cases reverse it......but as it's a progressing decease, it'll need treatment every so often...

Stroke n TBI patients only need 1 shot to take down the inflammation in the injured areas....
I just wonder if as time passes these areas won't become re-inflamated?

I did meet a patient last year that received the shots several years a
go after his stroke n he hasn't lost any benefits he gained from the injections

you know someone that has benefitted from the injections? in what ways? plus that is a good question if it lasts. too bad we can't find an unethical doctor to do it for 500 bucks as it costs next to nothing to do lol

Mark in Idaho 07-16-2014 11:21 PM

An unethical doctor would put you at risk. The important part is how and where the injection is made. Plus, Dr Tobinick has standards the patient must meet before he will do the injection.

The FDA will not find a way to get around the patent. Patents are what makes the extensive and expensive studies worthwhile.

Yes, it is about $$$ but those dollars are private money that are put at risk with the hopes of a future profit.

anon1028 07-16-2014 11:24 PM

Quote:

Originally Posted by Mark in Idaho (Post 1082719)
An unethical doctor would put you at risk. The important part is how and where the injection is made. Plus, Dr Tobinick has standards the patient must meet before he will do the injection.

The FDA will not find a way to get around the patent. Patents are what makes the extensive and expensive studies worthwhile.

Yes, it is about $$$ but those dollars are private money that are put at risk with the hopes of a future profit.

I still don't understand. what about the lasik surgery. wasn't there a original inventor. how does it end up spreading everywhere. did that guy not get a patent? I guess I'm not sure how it works.

RickyBobby 07-16-2014 11:25 PM

Mark, yes, his stroke left him real bad n he couldn't walk, talk n he had double vision
He had allot of issues, but had recovered to the point that he had flown himself to Panama to have stem cell treatments........that's huge........that he was on his own...in Panama!
Night night

RickyBobby 07-16-2014 11:28 PM

Quote:

Originally Posted by markneil1212 (Post 1082721)
I still don't understand. what about the lasik surgery. wasn't there a original inventor. how does it end up spreading everywhere. did that guy not get a patent? I guess I'm not sure how it works.

I guess maybe he didn't?

Mark in Idaho 07-16-2014 11:41 PM

Lasik surgery was invented by a medical equipment company. Early on, they did not even sell the equipment. They leased it for a per procedure fee. Lasik cost up to $4000 per eye in the beginning. As new technologies were developed that did not infringe on the original patents and the market expanded, these costs came down.

It will take time to recover the cost of the clinical studies. The existing studies do not count because they are not randomized or meet other statistical criteria.

With the FDA, the patent does not start running the clock until the FDA approval. Other doctors can do the procedure but they can not advertise it to diagnose, treat or cure any disease since it is an off-label use. Nor, do they have access to the technique of injecting it unless they have signed training agreements with Dr Tobinick.

I look forward to hearing how an mTBI patient responds. Those in the studies had much more serious injuries.

anon1028 07-16-2014 11:42 PM

Quote:

Originally Posted by RickyBobby (Post 1082725)
I guess maybe he didn't?

even 2000 altogether wouldn't be bad but almost 10000 after everything? geez. it would take me a year to save that from my disability and I don't know if it would be a wise investment. I doubt they do phone consultations. ill just find some enternacept and jab it into my neck lol just kidding. mark in Idaho if you read this aren't there any natural supplements that can reach the brain that are anti inflammatory

Mark in Idaho 07-17-2014 12:08 AM

Take curcumin. You can take 8 grams of it safely. Or, you can take tumeric, it has curcumin in it.

anon1028 07-17-2014 12:11 AM

Quote:

Originally Posted by Mark in Idaho (Post 1082734)
Take curcumin. You can take 8 grams of it safely. Or, you can take tumeric, it has curcumin in it.

thanks Mark. I already have some so I can get started. is it necessary to take omega 3 and krill?

Mark in Idaho 07-17-2014 12:16 AM

Why take Omega 3 and krill ? Take one or the other.

anon1028 07-17-2014 12:22 AM

Quote:

Originally Posted by Mark in Idaho (Post 1082737)
Why take Omega 3 and krill ? Take one or the other.

thanks for the info

RickyBobby 07-17-2014 06:31 AM

Quote:

Originally Posted by markneil1212 (Post 1082730)
even 2000 altogether wouldn't be bad but almost 10000 after everything? geez. it would take me a year to save that from my disability and I don't know if it would be a wise investment. I doubt they do phone consultations. ill just find some enternacept and jab it into my neck lol just kidding. mark in Idaho if you read this aren't there any natural supplements that can reach the brain that are anti inflammatory

What it boils down too is if you get good results, (like the folks in the INR videos), then it's worth the $10K....n more!

I might be doin this in the very near future .....
N yes they do phone consultations n you can fax or email your medical records!

I'll also point out, (like I did on my thread), that they've partnered with Wells Fargo bank to offer their patients a no interest, no payments for 12 months credit card.....so you don't need to "save up," you can pay it off during a year!

Also, the price just went up this month, as last month it was $5K,

anon1028 07-17-2014 06:36 AM

that's just for the injection but there are other costs. I think its kind of cruel ro go from 5000 to 10000 when I think 5000 was overpriced taking advantage of people in despair. I can't respect that. this certainly seems to be some logic behind this direct injection but the pain injection he gave for $6000 turned out to be a fraud and he was disciplined by the Medical Board. He is no angel. He's an opportunist. But I don't blame you for getting it done if I had the money to spare I would too

RickyBobby 07-17-2014 07:11 AM

Quote:

Originally Posted by Mark in Idaho (Post 1082734)
Take curcumin. You can take 8 grams of it safely. Or, you can take tumeric, it has curcumin in it.

The discipline ....in California? If so, I had read that it was for his advertising inaccurate claims n such......for back pain?

Believe me that I don't have the $ to spare.....I had to retire ...at age 39!....due to my disability......so my private pension ain't much!

I will be financing this......plus I paid allot more for my other treatments,

anon1028 07-17-2014 07:15 AM

yeah he advertised that he had an injection to get rid of back pain but in clinical trials it turned out it wasn't true and he got in trouble. But the research on this seems to be real. And if I were you I would go for it.I don't know if it was in California or Florida

RickyBobby 07-17-2014 09:54 AM

Dr. Tobinick is in California ...he opened a clinic in Florida to be more accessible to folks on the other coast n abroad......
Dr. Levine runs the clinic in Boca Raton....
Btw, all this talk has me exited ...lol
I just called the Boca Raton office to schedule my appointment, but I need to get lab work done first....so it'll be in early to mid August!

anon1028 07-17-2014 10:38 AM

that's awesome man keep us informed

RickyBobby 07-17-2014 01:40 PM

Will do, gotta have a lab panel done, (LabCorp), n a TB test, (CVS pharmacy)!:D

RickyBobby 07-18-2014 06:51 PM

Did TB test today.....at CVS minute clinic!
Need to go back on Monday to get rechecked .....results!
If it's negative I'll get my date for lab work....
1 step closer!

RickyBobby 07-22-2014 01:44 PM

http://neurotalk.psychcentral.com/thread206347.html


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