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Thread: Prialt or Zinconitide My experience so far..

  1. #11
    Junior Member ALPHUX's Avatar
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    Quote 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

  2. #12
    Alphux,

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

  3. #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.

  4. #14
    Junior Member ALPHUX's Avatar
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    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

  5. #15
    Junior Member ALPHUX's Avatar
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    Prialt

    Quote 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

  6. #16
    Thanks Steve.

    Sorry you didn't have more benefit, Z is so expensive; and that you encountered the memory or concentration problems of ziconotide. It is just so tough for everyone. I spend about one third my income to accomodate my pain. I wonder how much everyone else has to spend. It ain't cheap to feel crummy

  7. #17
    Junior Member ALPHUX's Avatar
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    Exclamation Prialt only

    Quote Originally Posted by dejerine View Post
    Alphux,

    Would you be kind enough to say if there is ANYTHING besides 5 micrograms of ziconotide in your intrathecal pump?
    Just the Prialt.
    However, even my biological sciences degree leaves me with some doubt on the concentration units being displayed in these posts. My trials resulted in a still continuous 1.51muG I think. Six years now. No side effects that I can tell. SCI (inc.) T12.

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