I real about this new pain medicine in Popular Science today..

[admin]

www.prialt.com

It's called PRIALT. And according to the article it is non-addictive.

I have no idea if this is something that would help someone with TBPI - but I thought I should post this so you can do your own research.

I do hope that it offers some hope for all of you.

[jennyb]

Thanks for that-I think this might be the one developed from sea snail venom. As usual, the manufacturer's own website is thin on detail, especially on negative information. Here's the official patient information sheet http://www.fda.gov/cder/drug/InfoSheets ... idePIS.htm there are some scary side effects and it has to be administered directly into your spine, that would freak me out!
Anyone tried this??
Jen NZ

[admin]

Actually spinal med pumps are quite common in the U.S. They are done on children often (children with CP, etc.)

[jennyb]

Yes I think they are quite common everywhere. There are some risks in using spinally implanted devices like this and not much evidence of long term success in avulsion pain-that's what would freak me out about using a device like that. If anyone had any long term success with one of these I'd be interested to hear about it.

[admin]

Jenny, isn't it a new drug? so how can there be long term success? I would think that if someone is in enough pain everyday that's so intolerable they would want to try it and see how it works for them. And if it didn't work out well for them, then they would stop.

[jennyb]

lol no I was replying to previous guest who was talking about spinal pumps, not the drug itself, those are the things that seem to have limited long term success as far chronic neural pain goes and are risky.

I truly hope this drug does work, my problem lies with the fact that often these new or invasive treatments are presented by the makers as being just another alternative to the pain relief problem, like, hey! try this! when actually they are risky procedures that should only be considered by people who have no alternative -many were initially developed for people with terminal conditions and were to be used as a very last resort. Maybe they will find a safer way to administer Prialt, lets hope so.
I am starting to notice that chronic pain is becoming big business now and drug companies and makers of these intra spinal devices are worryingly sketchy with details on the very real risks involved. Remember Vioxx? They knew it increased risks for heart attacks yet never made it clear.
Please check out the risks of ANY treatment for yourselves-contrast the 'information' contained in Prialt.com with the link I posted, the manufacturers own website is the last place you'll find the information that is needed, and that to me is very wrong.
Guest, this is the tbpi message board, you don't have to hide your name here. I know about the misery long term tbpi pain causes, I have had my own set of avulsions and accompanying pain for 25 years and have been counselling others for years who are in many cases much worse off than me. I make it my business to thoroughly check out any and all claims about pain relief, I have found there is nothing that works for everyone and there are some things that may cause worse problems, if only the manufacturers would say that openly in their information I wouldn't have to say it for them. And until they clean up their act I will always post any relevant information I find about new or old products so that people in chronic pain have ALL the information that is available. Yes, when the pain is bad enough frankly you consider anything up to and including suicide, but I don't think that makes it ok for the manufacturers to skimp on facts. If it's risky I want to know.

It's raining any my arm is hurting :0( so I'm sorry if I come across as grumpy! Like I said, if anyone has tried Prialt or any other spinally administered pain relief post here, we'd all be interested to hear about it.
Cheers Jen NZ

[Danzia]

My pain doc did trials on this drug. It was just approved by the FDA this past May I believe. He had high hopes for this drug for many patients.

But it does have to be administered directly to your spine. There are risks with any procedure of this type. But if you find someone who does these procedures often, you have a better chance of less complications.

gillian

[JsWoody]

Anyone tried this with the implanted pump? Its the latest that the pain clinic wants me to try.

[Master DIVER TOM]

This is amazing
The Quest for pain relief
If I could just find away to just get the stretch out of my nerves
I would settle for a shot of Novocain in a stretch nerve to deaden the pain from my birth erbs.
What you guys are posting about what out there for pain relief
It is interesting ware we overcome our limitation in-spite of higher pain levels
Pain no gain It all part of who and what we try to overcome . What weird is I am in less pain when I try to do something , but afterward pain.
Driving a semi with birth erbs for years pain level were +10 in pain by the time I got home
How we get threw taking the pain in our trys by posts are amazing to
Tom