United Brachial Plexus Network, Inc.

Found this link of the TBPI UK boards (Thanks Karl) and deffo wanted to share here... it does sound VERY promising for us!!! CHeck it out.. http://www.immunesupport.com/library/sh ... /CFIDS_FM/

COurt

Wow! Anyone out there try this yet?

Someone in the TBPI Group over here (U.K.) was taking this last year for the TBPI pain, but I haven't heard from him for a while...I'll email him and ask how he's getting on with it.

Liz

Thanks Liz.... I have emailed Dr. Belzberg about it as well. Hopefully we can come up with something!!! I might be up for trying this if it will work!

COurt

This is the information that Dr. B shared with me via email.....

"This is the trade name for the drug pregabalin. This is similar to neurontin (gabapentin), our main drug for neuropathic pain. It is not clear if the pregabalin will be any better but it can be delivered in a few alternative routes including IV.
We still need to gain more experience with the pregabalin to see if we will switch to it as a main drug for neuropathic pain."

I will be interested to talk to him more about this at camp in a few weeks...

COurt

I have been taking Lyrica 3x200mg for about 9 months now, instead of neurontin 4x300mg which I took for 2-3 years before. I'd say overall that my pain has been less during this period. I'd encourage anyone to try it but not to expect a miracle cure, I still get those (very) bad days. I also take Dihydrocodeine 6 or 8x30mg depending on how much the old war wound is burning. I've been on that for about 10 years. 24 years post accident now.
Cheers
Tommy

Hey all, Carrie saw her pain management doctor today. He changed up things a quite a bit. Start methadone 10mg twice daily. Start Lyrica twice daily, continue Neurontin, but at smaller doses. What he's doing is ramping her down on Neurontin 800-600-300-100mg and ramping up Lyrica 50mg-100mg over a few weeks. With the methadone controlling pain spikes thus discontinuing both Actiq (fentanyl) suckers and vicodin as needed. He thought highly of the results he's seen with the lyrica, so we're hopefull. I'll let you know how she does. Please give us some more feedback from peeps who have used methadone, and those who have used lyrica.

till next time, Dick