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Enbrel therapy



49 replies to this topic

#1 bella

 

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Posted 21 November 2012 - 03:27 PM

just heard they are using Enbrel injections to reverse the damage caused by stroke even many years after a stroke. Institute for Neurological Rehabilitation(search INR) in FL ans CA is already doing this and posting "miraculous" video results on You Tube. I know they have done real clinical trials on this,but am skeptical of the doctor doing these treatments and showing such remarkable results. I tend to think if it was a true break-through the medical world would know more about it. tried to search the boards here for info,but not sure how to do that. any help? or any thoughts on this new treatment?


#2 jangelini

 

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Posted 21 November 2012 - 03:55 PM

Enbrel is also marketed under the name Etanercept and a discussion on it can be found here

As for my personal take on this and all fantastic claims of miraculous healing, I'll keep an open mind but my wallet locked tight.


#3 nancyl

 

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Posted 21 November 2012 - 05:29 PM

I have been skirting the issue on and off for some time - researching and reading.... i do believe this guy is onto something --- i want more info --- but he is published by pub med - a gov site summing up clinicals... so if was a out and out quack he would be out of business... but he continues his research, and it is not cheap, and insurance doesent cover it.. sadly -- but the best surgical treatment for a "bad" back is- not covered either - in fact one has to go to germany pay 20 grand and spend 6 weeks there.... sooo open mind closed wallet for me as well... for now............... i do not think the medicine will "cure " a person nor does he make that claim- and he admits upfront not all people respond and even the video people are not making miracle claims - like the "blind can see" but claims of small things like walking better, thinking clearer, being able to dial a phone,- it helps with inflamation from the stroke..take the inflamation down and some stroke side effects MAY be lessened... do i believe the theory - yes - do i want to hand over 5000.00 ( yes we have done the consult) it is 5000.00 - NO, not today i wont.. but i might in the future...for dan -- financially it would be a drain, so i will continue to watch the studies as they are released -- ask no questions get no answers, try nothing and get nothing.......my view and i know it is a contraversial one... but i havent been accused of being a stupid person in a long time ( since my father in law LOL)... nancyl


#4 bella

 

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Posted 21 November 2012 - 05:44 PM

thanks for the input. it is tempting to do,but think I'll hold off for now. the doctor that does the treatments is board certified in Dermatolgy and General Practice. my brother is a Neurologist and said he'd keep me up to date on any more findings-but likes the fact that it passed the clinical trials for safety.


#5 nancyl

 

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Posted 21 November 2012 - 10:57 PM

thats pretty much exactly where i am at in thinking -- i spoke with our nuerology PA she is extremely educated , and she has no issue with it per say-- but like all things buyer beware..... also a big deal is made out of this guy being only a dermatologist and a general practice - doc - i say who cares ( to a point) at soem point the man developed an interest in helping others.. oh i am sure he making money no doubt-- but i do not believe his only motivation is money.. and as far as credentials although important- i want a doctor who loves being a doctor in their field, i want a waitress who loves her job, or a nurse who has the knowlege and experience- ( i do not care in the least if the letters following her name are ( NP, LPN or RN) not even a little as long as she has the know how---- for medical care do i care if the doc ( loose term) is a PA( yes he is not a MD) a MD or a DO nope ---- just know your stuff.. so somewhere along the line this guy has gotten involved in helping or interested in alleviating pain- how and why is not important.. he has has his clinic long enough that if he was a quack he would no longer have any liscense nor do i see that he has had any disciplinary action in terms of lawsuits....... there is documentation of him being disciplined for advertising before some clinicals where completed .. that can easily be chalked up to bueracracy ( sp) ... Bella since you have an inside track with brother being a nuerologist do keep us updated on what he learns/thinks ect... and i will do the same if and when i either learn more or give it a whirl for dan....also it is worth mentioning i did speak to a surgeon friend of ours about it and his biggest concern is infection at the injection sites-- but feels the chances of it are slim.. he said if he gets time he would do a little research on it as well...nancyl


#6 numnah

 

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Posted 22 November 2012 - 01:06 AM

I will put my 2 cents worth. We, too, went to see the people at INR in Los Angeles. They show the same three videos on line and in their office. The same people had "miraculous" recoveries. We never got to speak to a doctor, only office staff. The way they described it, they gave you an injection in your spine and you saw results in minutes. After talking to my PT orthopedist, he said their advertising is a little misleading. The Etanercept is injected in the tissue surrounding the spine, not in the spine. I'm not saying that it's not possible to get an improvement, but, I think if it were THAT miraculous, people would beat a path to his door, and he would be receiving the Nobel prize. We just got a suspicious feeling about the whole operation. If people get improvements, go for it and God bless. I wish folks all the best, but beware of something that looks too good to be true.


#7 bella

 

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Posted 22 November 2012 - 11:16 AM

numnah,
I appreciate your input and it pretty much sums up my feelings on the subject. think I'll keep on working at recovery and if a proven treatment comes along I'll go for it. Happy Thanksgiving!


#8 ruthpill

 

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Posted 22 November 2012 - 12:14 PM

A dermatologist works with this drug alot. I do not find it strange that a dermatologist has noticed a relationship. I actually take Enbrel for psoriasis. This was started by a dermatologist.
I haven't done any research. But, I will read what is available.

Ruth


#9 bella

 

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Posted 22 November 2012 - 08:12 PM

thanks! that makes sense. will keep an eye out for new info on the subject


#10 nancyl

 

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Posted 22 November 2012 - 08:38 PM

on pub med you can see his newest study released - i dont believe he has it on his website yet- it lists like 6 hundred and some cases and the statisitical outcomes.. it was released just last month - OCT of 2012- it is pretty vague, my husband paticular stroke cause was "accidental" - trauma related , not disease related, so i am somewhat more hopeful for him since i think inflamation is really a possibility... but like i said before not hopping a plane tomorrow - something like this will take time, money and planning soooo i will continue to research while i try to figure out if this is something Dan would benefit from.. heck who would have thought a trip to NY would be so full of good results--- i mean we were out of routine, running on tired, in a place we had never been, did lots of new things..... everyone cautioned me ( our friends and family) and i was told i was nuts... nope i had a gut instinct, shake up the world a little for us, and dan a severly affected person by stroke is not someone who would be a good canidate for change === well it worked.. so the naysayers are not always right...


#11 bella

 

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Posted 23 November 2012 - 10:33 AM

Nancy,
thanks for the input. my stroke was a result of a carotid dissection(no known cause-no trauma). I was 39 and this was 12 years ago. the thought of this Enbrel being injected in or near the spine is enogh to keep me from trying it. if you don't mind me asking: what did you find in NY? thanks again!


#12 nancyl

 

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Posted 23 November 2012 - 11:36 AM

the trip to NY was pure recreation-- we met up with another strokenet family ( stingray) and did a cruise-- everyone thought i was nuts taking my severly affected husband and flying to a sorta complete stranger ( we arent anymore LOL) you know what for both dan and ray ( stings husband also severly affected) it was one of the smartest things i did... i am not so worried about the injections near the spine ( it does not inject into the spine) -- dans injury was also a carotid artery dissection--- i am looking into all kinds of treatments for him the hyperbariac ( oxy) and the human growth hormone --- TX is studying this right now -- i am not doing just "shopping " for the right treatment ( if there is any ) nancyl


#13 bella

 

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Posted 23 November 2012 - 11:46 AM

thanks for the reply! some times recreation is the best medicine. I know I'm at my best when I'm doing something "normal". I have come a long way since my stroke-which was very severe. I had a craniectomy,a long hospital/rehab stay and a lot of therapy. no longer do Therapy(they said I couldn't get much more improvement from it). I can walk with an AFO and cane. I can get to where I need to go-just not a pretty sight to see. no use at all of my left arm and a lot of tone(been told by many doctors it's greater than most they've seen). I have treadmill that I use whenever I can. also have home exercises I should do-but am not very faithful about doing them. I will keep looking out for things to improve my condition but pretty sure I'll rule out the Enbrel for now.
wishing you and Dan all the best!
~Beth


#14 Ethyl17

 

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Posted 23 November 2012 - 09:42 PM

I think all of us look to the current strategies regarding stroke recovery. And for us here, we are so lucky in that we have so many doing the research, reading and we all share. Plus any of us who undertake any steps in recovery, whether they be medicinal, therapy-related, newest devices; we all post the result. We have our own little test trial group here and the great thing is that we are not in the dark, grasping at straws. All of us are educated, have done our homework and will not be duped.

I always go back to the advice I got from survivors here. Dead is dead and it is not coming back. The current research is in defining the grey or maybe still functioning areas and what is being done to stimulate, define and enhance them. There are scans that can be done, but they are expensive, not paid for and must be done on a regular schedule to determine results. That is not going to be paid for in the near future. One can only hope they fall into a study group, are willing to accept the risks and have a positive outcome.

I look to Bruce's Intrathecal Baclofen - a tried and true therapy. Bruce's surgeon had never done one placed as high on Bruce's spine as the placement requested by the Physiatrist. And this is a young, hot shot Neuro out of Yale. If he had doubts, it was enough for me.

We investigate, look to the results and studies and then share here. Someone always has info and is willing to share. From there, we all have a wonderful base to make decisions from. The few dollars any of us have to spend, must be spent wisely and with some sort of positive outcome. None of us expect miracles, but any step forward is welcome. Debbie


#15 bella

 

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Posted 24 November 2012 - 10:20 AM

thanks Debbie,
this is great information! what are the "scans" you mentioned? also, what results were gained by the Baclofen pump? my neuro suggested one for my tone-but I wasn't sure about something so close to the spine and didn't want it to loosen me up too much. I get around pretty nicely the way I am-just always looking for improvement. thanks again for the words of wisdom!


#16 merichsen

 

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Posted 24 November 2012 - 10:55 AM

 numnah, on 22 November 2012 - 01:06 AM, said:

I'm not saying that it's not possible to get an improvement, but, I think if it were THAT miraculous, people would beat a path to his door, and he would be receiving the Nobel prize.


Very, very true. We hear of miracle remedies here quite often. Sadly people spend a great deal of hope, time, and money futilely chasing them. If and when something is discovered and developed, it won't be a best kept secret we need to figure out. Could be why we're all familiar with names like Jonas Salk and Louis Pasteur. Until there's another scientist who's dedicated their life to a little more than 'Let's try this and see if we can sell it', our best bet is dedication and hard work which is our best bet proven path to results.

Sorry to be the killjoy, but if you hang around long enough, you'll watch people mortgage their homes to go halfway across the world for nothing.
It is what it is and there's no quick fix.

(((((((hugs)))))))
Maria


#17 Drex

 

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Posted 14 December 2012 - 05:59 PM

I talked to Peter Levine(stronger after stroke)about this treatment.and was told it was a scam. It sounded very interesting at first.but now I'm not even looking into it any more.it's sad that people try to take advantage of strong desire to recover.


#18 bella

 

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Posted 14 December 2012 - 08:04 PM

thanks for the input. after all I've heard and researched I've decided not to pursue it. think it sounds too good to be true. they did have a Face-book page at one time but now they won't let you comment,etc. something's fishy and it's a shame that he's getting hopes up and making money off people that are seeking real help.


#19 becky1

 

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Posted 14 December 2012 - 11:18 PM

I'm sorry, but I would really feel better about this drug if the clinical trials were handled by a neurologist, since this area is their specialty. To me, not doing so is like having an opthamologist test and sell a drug to treat the heart. Wasn't Enbrel originally used to treat arthritus, and similarly acting disorders? Which doesn't bother me because Botox, I think, was originally used to treat wrinkles. But, it makes me wonder, how are Botox and Enbrel the same, and how are they different? Why not find out by having them tested at the same time, but, this time, testing the drugs the way that scientists recommend or having 4 groups of people-the no-treatment group, fake-tretment group, botox treatment group, and the enbrel group? Neither the neurologist or the patients would know who was in which group. The last thing that bothers me is mentioned by Debbie- a stroke affects us because it kills brain cells. When we improve, it is because other neurons are now doing what the dead ones used to do. Is this dermatologist claiming that Enbrel does this? Because if it doesn't affect brain cells,then, like Botox, its affects are temporary. How temporary are they? Personally, I think that for that kind of money, the results should last for a lo-o-ong time! Thank you all, though, for sharing info with us. Ithink you can tell I'm not sold on this drug yet. Then,again, I'm a hard-sell in general. Please post it if you get more info. With more research, I may become more interested. Becky





















?


#20 dreinke

 

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Posted 16 December 2012 - 08:26 PM

The last time I wrote about this on my blog I got this anonymous reply. I also do not trust the studies even if they are written in PubMed. Beware.
Dean, this study, like most are solely authored by Dr.Edward Tobinick, Dermatologist, Institute of Laser Medicine (hair removal) who also are the same staff and home of Institute of Neurological Recovery which also went under the name Institute for Neurological Research. Tobinick began making claims in 1998 for the off-label use of the then new rhumatoid arthritis drug Etanercept (Enbrel). Tobinick promoted the use of this drug for disc-related conditions such as chronic back pain. Tobinick created his own 'patented' administration of the drug and called it DiskCure with claims of relief within minutes. Tobinick advertised the treatment and charged patients thousands of dollars for this 'unique' treatment. Tobinick self autored studies to support these claims. A few years later Tobinick played the same trick, this time it was Alzheimer's, and after a number of years of causing havoc, Tobinick would appear to have prioritized his new target STROKE and Traumatic Brain Injury. A new patient can expect to pay around $4500 for an intitial consultation and 1st injection. Etanercept (Enbrel) carries a Remember a vial of Etanercept (Enbrel) costs about $230. Just because it is expensive, does not mean it works. These scams cost some money to run. In recent years I have observed Australians being targetted successfully by Tobinick with his scams be they for Alzheimer's or STROKE etc. Here are a list of chronic conditions which Tobinick claims to treat.

Alzheimer’s Disease
Traumatic Brain Injury
Recovery after Stroke
Vascular Dementia
Frontotemporal Dementia
Primary Progressive Aphasia

Etanercept (Enbrel) carries a Boxed Warning
http://pi.amgen.com/...m/enbrel_pi.pdf

Challenging Tobinick's claims and practices feels like a gnat fighting on the back of an elephant, but maybe someday the past will catch up with Dr. Edward Lewis Tobinick, Dermatologist.


#21 becky1

 

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Posted 16 December 2012 - 10:28 PM

My question is how he's avoided law suits this long? Or, is it that he isn't, but is he making so much money, that it's just a drop in a bucket to pay them off?? I'm curious. Becky


#22 jangelini

 

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Posted 16 December 2012 - 11:11 PM

Becky

it's the infamous loopholes. Legally and technically Enbrel is approved by the FDA...but for other ailments. He's approved as a Doctor to prescribe and administer Enbrel. As long as he stays just this side of making illegal claims he's safe as there are many drugs used for "Off-label" treatments. One notable one comes to mind...Welbutrin was originally marketed for depression but doctors observed a strong tendency in Welbtrin to curb smoking and help some quit smoking completely. Still some people refused to try it because of the stigma against mental illness so though doctors could still use it for smoking cessation, they did further testing to prove smoking cessation efficacy and marketed it as Zyban simultaneously.

One that is approved for separate uses, one found accidentally, and where the name was not change, is one we're very familiar with---Gabapentin/Neurontin. It was originally marketed for Bipolar disorder but showed tremendous effects for people who suffer neurological pain--but at much different dosages. Tests were done to prove efficacy on neurological pain and was also approved for such but by the same name. Incidentally Neurontin is more effective against Neurologiac pain than it ever was in the treatment of Bipolar Disorder..

He's just toeing the line well,


#23 bella

 

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Posted 17 December 2012 - 10:47 AM

yes,I also wonder how he's avoided law suits,etc. but he may be on the way out(hopefully)as his Face-book page has cut back on it's info. I feel bad for those that shelled out all that $$ and are back at square one-or maybe even worse off. it's a disgrace and a disservice to the "real" doctors out there trying to make a difference in our lives.


#24 bella

 

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Posted 17 December 2012 - 02:00 PM

beth again,
now you cannot post anything on his Face-book page. I think they may be in trouble. found this in my research(read down to some of the comments-they don't even ask for medical history or make sure it's really a stroke):

http://danoday.com/b...eakthrough-com/


#25 becky1

 

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Posted 17 December 2012 - 06:27 PM

Thank-you , Bella. Sounds like a charlaton to me. I wish he had to give people their money back, but he probably didn't even keep accurate records of who and where they are. WHAT A SHAME, because I really wish there were a drug that helped. Some day there will be, just not soon enough. Becky






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