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Prialt or Zinconitide My experience so far..

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    Prialt or Zinconitide My experience so far..

    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!

    #2
    Scale Prialt

    X on a scale of 1-10 how has the prealt perormed. I did not get a trial because of the reviews from friends in the medical field. A friend that is a NS told me he was an investigator for the drug during trials. His experience w/ the drug was not positive. He commented that the titration up was too agressive. Please rate your pain pre and post drug therapy.
    Feelin good is good enough!

    Comment


      #3
      My doctor was also involved with the original trials of Prialt. He believes if you titrate slowly there will not be a problem. So far I have had no pain relief at 3.8ug/day. I am still at 10 re: pain scale. So far no side effects that I can directly blame on Prialt.

      Comment


        #4
        GET OFF OF PRIALT. That stuff screwed my life up big time. It actually made my pain worse while I was on it and it completely wiped out my memory. Check out my post on it here.
        Sometimes I still struggle to remember things from just a few days ago. It's really affected every aspect of my life in a negative way. Don't let them turn up anymore and have them titrate you off of it. TRUST ME, GET AWAY FROM IT.
        C-5/6, 7-9-2000
        Scottsdale, AZ

        Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

        Comment


          #5
          PLEASE don't let one persons experience scare you off. My wife was on the maximum dosage of intrathecal morphine. To make a long story short, it didn't work to well. Tried combinations with marcaine, clonodine , all the orals. High dose caused a granuloma at catheter tip and catheter exploded.

          Switched to the prialt and started at .9mcg per day and have titrated at .10 mcg per day weekly and is now at 3.23 mcg daily and doing great. The trick is "SLOWER IS BETTER". Avoid the side effects. The therapeutic window for Prialt is very narrow. Take your time. They will supplement with orals if you need them.

          But PLEASE don't rule it out.

          God Bless,
          Mike

          Comment


            #6
            Thank you Mike. I stayed at 3.8mcg for another week. Tuesday I will have it turned up again to 4.3. So far I have no pain relief but I keep hoping. I have started having some pretty severe spasms in my lower back and abdomen. I just can't tell if it is the Prialt or some other SCI thing. I will keep you all posted

            Comment


              #7
              I would just like to say thinks to everyone for sharing their experience on Prialt. I may be wrong, but many a CP subject has lots of musculoskeletal pain as well as the skin burning to light touch or temperature change. I am trying to read these descriptions to see if Prialt is helping musculoskeletal pain or the neuropathic burning.

              Rybread, they discovered several years ago that central pain patients have loss of working memory. If your pain worsened and your memory did also, it is not reaching too far to speculate your CP may have worsened, IMHO. Try PubMed and look for central pain and working memory. Pain and memory are linked in the body, with many of the same chemicals affecting both. Although it is ineffectibve, I think maybe the brain is trying to suppress the pain, and as a consequence may be suppressing memory as well. My two cents.

              Comment


                #8
                My husband didn't have any good results with Prialt. He was on it for almost 9 months and the highest dose used was 8.5 mcg. She said some patients may need up to 19 or 20 mcg. He also had Morphine and Clonodine mixed with it. His pain doc increased the Prialt VERY slowly as she was concerned about side effects. He didn't have any thankfully.

                Comment


                  #9
                  dejerine, when I had that stuff in my system it got to the point where I didn't know what year it was. I couldn't remember what I did that morning, so I was told, and the doctor's office had a lot of people going through severe side effects like that even while titrating very slowly.
                  C-5/6, 7-9-2000
                  Scottsdale, AZ

                  Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

                  Comment


                    #10
                    My husband has had Prialt in his pump. He has weird sores on his legs, a sore on his toe that hasn't healed in a year, and recently a red patch on his forehead. Anyone else have these? The sores are moving to his arms too. Please help. I am so afraid.

                    Comment


                      #11
                      Originally posted by xmasholli
                      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!
                      HI,
                      YES I AM ON 1.5uG/DAY BUT IT HELPS-BETTER THAN NOTHING.
                      STEVE

                      Comment


                        #12
                        Alphux,

                        Would you be kind enough to say if there is ANYTHING besides 5 micrograms of ziconotide in your intrathecal pump?

                        Comment


                          #13
                          Prialt (zinconitide)

                          Well, I wish it were better news. I now have 5.6 micrograms/day of Prialt in my pump. I haven't had any noticeable side effects so far. But no pain relief either. I have just Prialt. The concentration is 10ug per ML. We have not mixed anything with it. We want to see what effects the Prialt has alone. I am only going to do this till the end of this fill -- because as of yet there has been no pain relief and I want to see if the Prialt could be causing weakness in my arms and shoulders. I am going to take a Prialt holiday. Plus it is astronomically expensive. Last time we paid $1700. for the fill! And, I am not sure our insurance is going to cover it! I have had combinations of many medicines in the pump in the past when we lived in CA. But, it has been hard since moving to Florida.

                          Comment


                            #14
                            Hi
                            I am a T12 incomplete 7 years post SCI.
                            I had the Prialt in '06 and agree with 'Rybread'-if it is not giving you benefit-get off it! After 6.00 mcg I became so 'forgetful' I forgot to watch for my own symptoms! A stray word was the only reason I remembered to tell the Doc. what was happening. Now I am on 1.5 mcg. not for pain but increased proprioception.
                            It has helped but only marginally. Better I think for Cancer patients-i.e. non-neuropathic CNS uses.
                            EMAIL; stevia@aptalaska.net
                            Steve

                            Comment


                              #15
                              Prialt

                              Originally posted by dejerine
                              Alphux,

                              Would you be kind enough to say if there is ANYTHING besides 5 micrograms of ziconotide in your intrathecal pump?

                              Hi I am kind enough to say 'nothing else in pump'

                              Steve

                              Comment

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