Hi Billy, I just wanted to briefly give you my experience with trying Prialt in my baclofen pump. I actually had the baclofen pump surgery done to try intrathecal medication because I have tried practically everything medication-wise out there for the severe, nerve pain I have been living with for 16 years. I got very tired of trying medication after medication and dealing with all of the side effects. So my pain management doctor recommended trying the baclofen pump and having anesthesia type medication with the baclofen in the pump to see if it would decrease my nerve pain. I cannot remember the name of the first medication I tried, but it did not help. So after a couple of years thinking about the prialt and desperate to get pain relief, decided to try it in my pump. Through the pump, they start with a very very low dosage to try and bypass any side effects, which sounded kind of scary (vision problems, memory problems), so anyway I was never able to get up to the full therapeutic dosage my doctor thought would work for me because I had a different side effect of severe constipation when using the prialt. My doctor tried to tell me it wasn't from the prialt but that's the only thing it could have been because that was the only thing I was doing different. So knowing that I was going to have to continue to go up on the dosage, I opted to discontinue it. I never got any relief from it on the low dosages I was on. I was very disappointed. I had such high hopes that this medication would be the answer to my prayers to give me pain relief. It may have if I could have stuck it out, but I just could not do it. So I didn't get the typical side effects, but still a side effect I could not tolerate unfortunately.
I wanted to share my story, not to discourage you from trying the medication, but to give you my experience just in case you have similar problems with the prialt. And I really hope it works for you. It's so difficult living with this chronic nerve pain. It just drains your quality of life. So good luck and definitely keep us posted. Take care, Corie ----- Original Message ----- From: Billy Lang To: quad-list Sent: Wednesday, September 30, 2009 11:35 AM Subject: [QUAD-L] Prialt Tomorrow, I am going to a test to see if Prialt delivered through a pump directly to my spine will alleviate my pain. http://www.prialt.com/ After 20 years in the chair I am suffering from herniated discs in my lumbar and arachnoidtis. I have yet to find a combination of opiates (oxycodone, OxyContin, patches, Lyrica, etc.). The drug has had some positive effects on MS patients. I am told that I will be the first quadriplegic to test the drug's effectiveness. I'll let you know how it turns out. Don't let what you cannot do interfere with what you can do! Billy www.langfoundation.org
