Hi everyone! I'm new to the boards and saw this post. I have had the trial and am awaiting final approval for the pump implant with this med. I've had CRPS for going on 10 years, have 17 blocks, acupuncture, acupressure, guided imagery and other relaxation techniques, TENS and SCS, pool therapy, physical therapy, medications, a spinal cord stimulator implanted with a revision to surgically implant paddles for about 4-5 years along with 4 depleted batteries, desensitizing and whatever else was offered to help ease this monster. My daily pain level is between a 7-8. After the trial it dropped to a 5 for the first time in over a year! Nothing else has eased the pain like this medication has. As usual I had to have another MMPI and that was fine. Their concerns were that any psychological issues would increase or occur. I suffer from major depression and have for 35 years, but that's controlled through medications and talk therapy. I cannot say enough about my experience with this med. I wanted to ensure an accurate reading so I was off all pain meds for about 3 weeks prior to the trial. This was not only the strong prescription pain meds, but the Lyrica and anything else I was taking for the RSD. It wasn't pleasant as I'd been on Fentanyl and Dilaudid/Methadone or Actiq for breakthrough this past year trying to find something that would break the flares, along with the relaxation, etc.

Several of our members from our nonprofit asked I journal my experiences with this as it goes along. With so many members we all felt that were a more appropriate forum to journal these events as opposed to bulk emails as not everyone would be interested. I cannot wait for the pump to be implanted. They are going to titrate up slowly of course. The only issue I had with the trial was that it was the standard dosage for a trial, but still too high for my body. For a day or two I was very dizzy and unable to walk a straight line...I couldn't before with the RSD, but this was the walls keeping me from falling, one foot on the floor when I closed my eyes, etc. That lasted a couple of days at most and the pain relief lasted another day or so before it started to return.

For me it was wonderful and well worth having the implant procedure. They will be removing the battery and lead wires to my spine as the SCS stopped working again. The stim was not as effective these past few years and to have the battery replaced evey year was additional proedures I didn't want with the RSD. I cannot remember to charge my cell phone so the rechargable battery was not a good idea for me. After so many times it goes completely dead the wires have to be replaced as well, according to the Medtronics rep.

Take care everyone!

Hi Bonnie, and welcome to the forum!

I have been hoping someone would be able to take Prialt soon, I have a good feeling about this drug. It's made from cone snail venom and is an unbelievably powerful painkiller, but of course is only recently available, and only in the form of an intrathecal pump.

I'm sure everybody will be *very* interested in reading your journal, and very many thanks for letting us know about it. How can we read about it, is there an URL we can visit?

I do hope it proves to give you the relief you need and hope the procedures go well for you.

Hi Debbie - we've had some good threads on this, here they are:
From Mike:
http://neurotalk.psychcentral.com/sh...onotide+Prialt
http://neurotalk.psychcentral.com/sh...onotide+Prialt
From Jo:
http://neurotalk.psychcentral.com/sh...onotide+Prialt

all the very best!

very interesting. i am always hopeful someone will find something that is safe and works! thanks for the postings on this! joan

Thanks so much for all the information- I also would love to hear more as you use this drug...

Please let us know how u r doing

Debbie

All I know is that they began researching this back in 2002 or 2003. It was the newest "hope" for pain management after ketamine.
It's amazing how many years it takes for the trials to be completed and get a new drug into the market.

Ziconotide is the drug they were going to use as the trial for my pump. The difficulty was there is no accepted trial procedure for Ziconotide, and if it was used as as a first line it would have required a intrathecal trial for 5 - 7 days. So from my Doctor's practical point of view, it is necessary to do the usual 48 hour trial with Hydromorphone to determine efficacy and then add Ziconotide after implantation and titrate up while keeping the opioid at a reasonably low level.

This was the plan anyway...