Obtaining Enbrel for discogenic pain

  • Thread starter Thread starter seekonk
  • Start date Start date
S

seekonk

Guest
I need help finding a doctor willing to script Enbrel for injection for chronic refractory pain due to degenerative disc disease since April 2009. Currently on Tramadol and Meloxicam, neither of which works well any longer,

I have already contacted the clinic in California that does this. However, I am on the East Coast, and cannot easily travel to California, especially if i should need more than one injection. In addition, they charge a fortune for administering the injections.

Is anyone aware of doctors on the East Coast (preferably Boston area) who would prescribe this treatment?
 
I'll ask my doc's office in Boston if they know of anyone but you know it does run over $500/injection and is not covered by insurance? Enbrel has not been approved for pain management...but I happen to know it works.

I not only broke my neck and had major post-op pain but I have rheumatoid arthritis and my doc decided to try me on Enbrel for the Ra 6 months post-op. Didn't do a damn thing for the Ra but stopped the neuropathy cold. It works! And I only took it for 3 months.

If you still want to try it, I'll ask when I next talk to them(should be next week) but I have my doubts. But if anyone is using it, it would be my doc at New England Baptist Hospital or their pain people. If ever you are interested in being evaluated for your neck to see if surgery is possible, ask for a referral to Dr. Eric Woodard, chief of neurosurgery at New England Baptist. He does surgeries no one else does...amazing stuff. He rebuilRAB spines so that you have no fusions. Most of his practice is fixing what others docs messed up.

Might be worth a referral and cheaper than Enbrel.

But if you can't find anyone, once they approve you for the shots, you do them yourself. They are pre-loaded and you just hit the button and in it goes. Once a week. Has to come from a special pharmacy as it has to be kept cold at all times.

I know Paula Abdul used it to recover from her neck surgeries.

Anyhow, do you want me to ask around?

Jenny
 
Oh yes, please, I would really, really appreciate it if you don't mind asking around.

The Enbrel treatment for degenerative back pain is actually for many people only a single injection of 25 mg, which provides long term relief for many, though not all. There is a clinic in California that does that (don't know if I am allowed to say names but if you google "etanercept perispinal" you'll see a lot of references to the doctor T. who does this).

But, one has to travel there and they ask thousanRAB to give you that single dose. This seems silly - the injection is subcutaneous and I know how to self-inject for free :) (or have a friend do it for free if it actually neeRAB to be close to the area of pain as they say). And some people do need more than one dose, which is a little ridiculous if you have to fly over there each time. :eek:

But I will do it if I have to - I have no life anymore that doesn't revolve around the constant pain. At this point I don't care about the cost - I'd rather be pain-free than buy a house.

By the way, my condition is not operable. I only have a couple of slight bulges in the lowest two lurabar discs, without visible impingement of the nerves, yet for 17 months I have been pretty much disabled with pain, and it is not getting better. I had an epidural steroid injection, but they misplaced the needle and jabbed the nerve root, causing nerve damage and sciatica as a result of the injection, so this is why I like the Enbrel treatment, because any more epidurals are out of the question as far as I am concerned.
 
Just to give some background, this is a relatively new treatment that seems to have given some amazingly good results in certain patients. Some have posted here in the past, and famously Paula Abdul is using it successfully for her back pain. For Enbrel (Etanercept) this is an off-label use. In other worRAB, they cannot yet claim this on the label, but doctors can prescribe it if they see fit. I am looking for a doctor in he Northeast who would do so.



From the article
 
What they do is actually also sub-q, just like you did, except that they do the sub-q injection near the spine area of pain. This is perhaps not clear from the abstract I posted, but they explain it in this article and other papers by the same authors. It is all sub-q.

Also, for many people just one or a couple of injections give long term relief, not like RA where you have to keep injecting.

I would never risk another epidural after my bad experience with an epidural where they nicked my nerve root and caused nerve damage. That is why I like the idea of injecting Enbrel sub-q, as these people do.
 
Glad you clarified that. Made it sound like they were injecting it in the spine. So they just put it near the area that is hurting the worst? Neat.

Anyhow, I'll be calling Wednesday....my surgeon is only in the office on Wednesdays......spenRAB 4 days of the week fixing what others messed up. And I can agree with you on the epidural. I had one attempted and I told the doc trying to do it to pull out. He knew I was allergic to contrast dye before even starting but didn't tell me until he was about to use it that he would use dye to make sure where he was and then inject. And since I'm also allergic to steroiRAB, he was only injecting a local....but never even told me that he had to use a small amount of contrast dye. He chewed me out for stopping the shot. I actually didn't stop it....I just demanded that they have a crash cart available in the room if he used the dye. SteroiRAB don't cause anaphylactic shock with me but contrast dye does. And told me I was an idiot. He was just all about $$$$$...wanted to get paid for doing a shot that he never should have even tried. I didn't know what was involved but he knew my allergies and still tried. Could have killed me. He was the idiot...and a money hungry one at that.

I'll let you know what I find out.

Jenny
 
I can see by your excerpt why they charge so much....they give it to you in the back. It's not what I did which was sub-q injections. But that worked too. But since it's unapproved, they are taking a big risk doing this so they charge a ton for it.

I have to speak to the group secretary this week so I'll ask if they know of anyone or anywhere that might be doing a limited study on this in the area or just treating with it.

I get back to you.

Jenny
 
Thank you, Jenny.

Yes, that sounRAB like a horrible experience. My epidural, when they nicked the nerve, was the most pain I had ever felt in my life, all down my leg and foot - I jumped about a foot off the table with the needle still in me - very frightening - and afterwarRAB my blood pressure dropped like a rock and they had to observe me there for almost an hour before it came back up and I could finally sit up without passing out. I initially thought I must be having either a heart attack or anaphylactic shock but it was just a vasovagal reaction. :dizzy:

So no, no more epidurals for me... ;)
 
My surgeon's office didn't know of anyone. My suspicion is that if they do, they aren't tell as it's off label.

God, I wish I could have helped you more.

Have you talked to your insurance company about them paying for everything except the drug? It is a consult on your problem and the treatment cost should be covered....just not the drug. At least you 'd get a good deduction on your taxes...that is tax deductible if they won't pay. And perhaps the place in CA would give you a single dose self-injector to take with you when you come back east.

Now I wish I had saved the extras I had when I stopped but they'd be out of date by now.....I gave them to my doc for elderly who couldn't afford them.

Sorry....I was hoping. But I will keep my ears open.

Jenny
 
Back
Top