It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Stroke Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 06-20-2011, 09:00 AM   #1
Newbie
(female)
 
Join Date: Jun 2011
Location: Temecula, CA United States
Posts: 5
daughter01 HB User
Question Any experience with Perispinal Etanercept?

My mother is going in for a consultation and possible treatment tomorrow morning for this. I was just wondering if anyone has any first-hand knowledge or knows of anyone who has had experience with this treatment? I am hoping that it is not just a gimmick or scam.

My mom had her stroke 9 years ago and we have been through so many clinical trials, treatments, PT, Botox, Bioness and many other "treatments". If this doesn't work, my dad wants to try stem cell treatments.

Please wish us luck and keep us in your prayers.

Last edited by Administrator; 01-12-2013 at 12:27 AM.

 
Sponsors Lightbulb
   
Old 06-20-2011, 11:41 AM   #2
Senior Member
(female)
 
Alberta1967's Avatar
 
Join Date: Oct 2006
Location: Rock Hill, SC. USA
Posts: 202
Alberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB User
Re: Any experience with Perispinal Etanercept?

I do wish you & your mother luck. Lst us know how it goes for her ok? Alberta

 
Sponsors Lightbulb
   
Old 06-20-2011, 02:04 PM   #3
Newbie
(female)
 
Join Date: Jun 2011
Location: South Florida, USA
Posts: 4
bjm1189 HB User
Re: Any experience with Perispinal Etanercept?

I'd like to hear what you think of it after you've had the consultation. I took my husband, who had a stroke a few months ago, for a consultation, and we were disappointed that we were unable to see a doctor or anyone except a physician's assistant, who would not answer any questions at all. Not sure what the purpose of the consult was, other than to tell us that if we wanted to see a doctor and get answer to questions it will cost $400. I've done quite a bit of research online and continue to be dubious, in part because if it works as well as they claim, it would be all over the news. I'd love to believe it, but ....

Last edited by Administrator; 01-12-2013 at 09:57 AM.

 
Old 06-20-2011, 02:13 PM   #4
Newbie
(female)
 
Join Date: Jun 2011
Location: Temecula, CA United States
Posts: 5
daughter01 HB User
Re: Any experience with Perispinal Etanercept?

Quote:
Originally Posted by bjm1189 View Post
I'd like to hear what you think of it after you've had the consultation. I took my husband, who had a stroke a few months ago, for a consultation, and we were disappointed that we were unable to see a doctor or anyone except a physician's assistant, who would not answer any questions at all. Not sure what the purpose of the consult was, other than to tell us that if we wanted to see a doctor and get answer to questions it will cost $400. I've done quite a bit of research online and continue to be dubious, in part because if it works as well as they claim, it would be all over the news. I'd love to believe it, but ....
Just called and asked about this "consultation" and you are right. They said that it "may be possible" to see the doctor on the same day if he is available though.
Just curious, what did the PA tell you? Were you discouraged with the information or simply the lack of information?

 
Old 06-21-2011, 01:47 PM   #5
Newbie
(female)
 
Join Date: Jun 2011
Location: South Florida, USA
Posts: 4
bjm1189 HB User
Re: Any experience with Perispinal Etanercept?

I'll be interested to hear your thoughts after a consultation. I agree that the testimonials are compelling, but wonder why there are no clinical trials, why the manufacturer isn't publicizing, etc.

 
Old 06-21-2011, 01:51 PM   #6
Newbie
(female)
 
Join Date: Jun 2011
Location: South Florida, USA
Posts: 4
bjm1189 HB User
Re: Any experience with Perispinal Etanercept?

The lack of information made us kind of suspicious, so we left. I've done more research and learned that the doctor who's head of it is only a "voluntary instructor" -- not an employee of UCLA. The whole strategy just seems, again, suspicious to me. To charge $400 for an exam I understand; to charge $400 to get answers seems unreasonable. Your thoughts?

Last edited by Administrator; 01-12-2013 at 09:57 AM.

 
Old 06-21-2011, 07:52 PM   #7
Inactive
(female)
 
Join Date: Feb 2009
Posts: 3,894
Blog Entries: 12
jennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB User
Re: Any experience with Perispinal Etanercept?

Thought I'd add a little info on the drug itself.

Etanercept is a biologic drug used primarily for rheumatoid arthritis. But it was discovered that it helped with chronic pain. It was used "off label" to treat those who were post-op patients with spine issues, first and now, I guess it is being used more widely for chronic pain.

What exactly is your mom hoping to use it for...pain? paralysis?

In 2007, I was on this drug for 3 months for RA. It so happened that I was just 6 months post 2 spinal surgeries. I have to admit, it shut down the spine pain very quickly so it does work. Since then, we have had several people here thinking of going to California for the treatment except it is very expensive. I understand that very limited clinical trials have begun for the drug but just to treat spinal pain.

If others are using it for other disorders, you need to know that your insurance will NOT pay for the drug as the use is off-label and not approved by the FDA. So you are looking at $500+ per shot just for the drug if not more(that is what we with Ra pay). And it may not help or may cause problems. In 3 months, I developed all sorts of fatty tumors all over my body. In stopping the cytokine, TNF(tumor necrosis factor) it allowed my body to go nuts forming benign tumors. I have since found another biologic drug that does help.

These drugs are extremely potent. The local side effects of redness and itching and swelling are nothing compared to the other possible side effects of developing cancer, TB and a few other things. I know most docs are only giving 1 shot in the peri-spinal area and hoping that will help whereas we with Ra take it weekly. So perhaps the side effects we face are not a problem.

Enbrel(the brand name) is specifically for RA and other inflammatory diseases. It may work for chronic pain. If this drug is being used to help reverse the effects of a stroke(paralysis)I would be very skeptical. I was paralyzed after my spine surgeries(broke my neck) and it helped with the pain but not the paralysis.That took time and lots of work to overcome. I was lucky the damage was not so bad it could be overcome.

"Miracle drugs" are often miracles only for the doctor's checking account. Proceed very carefully.

gentle hugs...........Jenny

 
The Following 2 Users Say Thank You to jennybyc For This Useful Post:
Alberta1967 (07-14-2011), writeleft (07-14-2011)
Old 06-22-2011, 05:26 AM   #8
Newbie
(female)
 
Join Date: Jun 2011
Location: South Florida, USA
Posts: 4
bjm1189 HB User
Re: Any experience with Perispinal Etanercept?

Thanks, jennybyc:
The people marketing perispinal etanercept are pitching it --

Uh-huh. I think you're right ... most of the miracle will be happening to the doctor's checking account. thanks again.

Last edited by Administrator; 01-12-2013 at 12:14 AM.

 
Old 07-14-2011, 10:59 AM   #9
Senior Member
(female)
 
Alberta1967's Avatar
 
Join Date: Oct 2006
Location: Rock Hill, SC. USA
Posts: 202
Alberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB User
Re: Any experience with Perispinal Etanercept?

I called yesterday to check on this.

<They said> as I am in S.C. & they are in Fl, we go could do my exam over the phone for 45 mins. And for 400.00., and you don't have to pay it all at once. You could do it though their credit partners. I don't think so.
Alberta

Last edited by Administrator; 01-12-2013 at 09:58 AM.

 
Old 09-14-2011, 08:04 AM   #10
Newbie
(male)
 
Join Date: Sep 2011
Location: coral springs florida united states
Posts: 1
mferro HB User
Re: Any experience with Perispinal Etanercept?

I had recently went for a cosultation at the INR. I was discouraged because I had no clue what it was about.

 
Old 11-23-2011, 05:53 PM   #11
Inactive
(female)
 
Join Date: Feb 2009
Posts: 3,894
Blog Entries: 12
jennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB User
Re: Any experience with Perispinal Etanercept?

I would assume that since we never heard back from the 2 people who have gone there for treatment, that it did not help. They would have posted if it worked. They did not and neither did the daughter.

I have been on etanercept(trade name Enbrel) and it is no big secret thing. They charge a lot because it is not approved and most of your money goes to the malpractice coverage for using unapproved drugs. The regular cost to those of us with rheumatoid arthritis is about $500/shot.

It works to keep a part of the immune system lowered. It is based on the theory that a cytokine called tumor necrosis factor is turned on and never turns off again and this drug helps to inhibit it. It has a half-life(how long it works) of 7-10 days so how is it going to help, giving you 1 shot, is beyond me. It is gone and out of your system in 2-3 weeks. And tumor necrosis factor has nothing to do with strokes.

I firmly believe they are playing on the fears and needs of stroke victims(I am one...I've had 5 strokes). Just telling the patient they can move will help them to actually move. Doing a re-test 10 minutes after the shot shows NOTHING. For the most part, it is still in the skin and not in your blood stream.....it's given subcutaneously, not IV.

For your $4000, you are getting an $500 shot. Go put the money into high tech in-patient rehab and you'll get far better results but that takes work and this doesn't. I've had strokes and I've done the work and I got back just about everything. Even broke my neck and was paralyzed and worked my butt off and got 95% back but it was all done with PT and work, work, work.

You can't get something for nothing and that is what this scam is. Recovery takes work.

Jenny

 
The Following 2 Users Say Thank You to jennybyc For This Useful Post:
Alberta1967 (11-23-2011), JoycePuertoRico (11-24-2011)
Old 11-24-2011, 04:29 AM   #12
Newbie
(female)
 
Join Date: Nov 2011
Location: Homestead FL 33033
Posts: 1
JoycePuertoRico HB User
Re: Any experience with Perispinal Etanercept?

Jenny:
Thanks for the info and for sharing your experience w/ me. I am so desperately looking for something that can improve my dad's health. He's been under therapy since he had the stroke and he's working sooo hard but his improvement has been so little. He's health is deteriorating every day and now he just pray asking to God to end his life. I have to confess, Jenny, that the testimonials look so real and very, very convincing. At this point I don't know what to think. How do you know that the shot last in the system only a couple of weeks? I hope that you keep doing well. Again, thanks for your time on replying. Joyce

Last edited by JoycePuertoRico; 12-15-2011 at 01:38 PM.

 
Old 11-24-2011, 08:49 AM   #13
Inactive
(female)
 
Join Date: Feb 2009
Posts: 3,894
Blog Entries: 12
jennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB User
Re: Any experience with Perispinal Etanercept?

What you always have to remember is that a clinic like this will show you only the good stuff and never tell you of how many it didn't work for. And since the drug is not in a clinical study, they don't have any type of controls with it so for all you know, the people who had good results only had minor strokes or TIAs. For all you know, the people weren't even stroke survivors. When they pay people to give testimonials, you get a lot of lies.

But there are rehab centers that use some of the newest techniques to help stroke survivors recover. And you can keep on recovering from a stroke for years so the PT needs to continue for years.

What this clinic is trying to sell the most is hope because strokes rob the patient of hope....not just by the problems that occur but because of the chemical changes that take place in the brain itself. Get him some psychiatric help for his depression and that may help too. Hope really has to come from within, not from the outside.

Buyer beware.

Jenny

 
Old 11-24-2011, 11:35 AM   #14
Senior Member
(female)
 
Alberta1967's Avatar
 
Join Date: Oct 2006
Location: Rock Hill, SC. USA
Posts: 202
Alberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB UserAlberta1967 HB User
Re: Any experience with Perispinal Etanercept?

I really believe that if it worked like they said, the gov. would approve it ASAP, just to get people off of disability. Just my opinion. Alberta

 
Old 11-24-2011, 05:27 PM   #15
Inactive
(female)
 
Join Date: Feb 2009
Posts: 3,894
Blog Entries: 12
jennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB User
Re: Any experience with Perispinal Etanercept?

Good point Alberta.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Anyone have experience with INR? daughter01 Stroke 12 09-14-2012 03:37 PM
pfo closure for stroke TINAV03 Stroke 13 12-21-2010 06:39 PM
Experience with massive right side stroke needed! mollotm Stroke 7 06-28-2010 10:54 AM
A New Experience staceyisme2 Stroke 2 06-13-2009 07:02 PM
In need of advice from people who have had TIA's Scout- Stroke 1 09-23-2006 05:11 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 12:33 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!