Hello all, I apologize for not having my e-mail available. It now is.
I wish I had terrific news regarding the Prialt that is in my medtronic pump. I really don't like to post because I don't want people to give up hope for pain relief. If I didn't have "hope" I wouldn't be able to go on each day. I am a c6/c7 SCI due to a surgeon's ego (he didn't use a guard during surgery)! That was 1992; 15 years ago!!! Anyway, I have been in constant pain for the last 14years. I have kept very current on new things, therapies, medicine, etc; for pain. Now I am trying Prialt. First of all I wanted to get off the intrathecal morphine--getting off was terrible! I was absolutely a mess for over a week (but damn if it hadn't helped with my aches and pains). Not the burning nerve pain but the joint pain in my arms etc.
As far as the Prialt, My pain doc is very conservative; thank goodness; since I have preached to him what a lightweight I am where meds are concerned. We started at .6ug/day and have slowly increased to 3.8ug/day over the last 3 months. I am not sure if I am having side effects to Prialt or being off Morphine. My arm muscles and joints ache; as if I have carpal tunnel. I am having severe abdominal spasms and back spasms. It is very difficult to differentiate between what symptoms are new and what would be normal for me. I have been on something for the last 8 years intrathecally, or orally so I have lost track as to what is normal. All I know that so far, nothing has helped! (I take that back; hypnosis & meditation helped during the process but when I was "awake" the pain came rushing back!)
I would like anyone that has actually had experience with Prialt to either e-mail me or message me. I will try to keep you posted on my experience with Prialt. Oh yeah, it is terribly expensive -- so far we have a bill of over $3.000. And we are having trouble with out insurance companies. Medicare and Tricare. LIFE IS SUCH A JOY! Actually, the only way my husband and I made it through the last 25 years --- humor!