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Started Prialt yesterday

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    Started Prialt yesterday

    I seperated threads re the pump issue and Prialt. While related Prialt is, in and of itself, an interesting topic.

    My insurance essentially refused it by making my co-pay $5000 and holding it was off the formulary.

    My doc spent time with them, reviewed my history blah blah and net they agreed to add it to my approved meds, co-pay i'm not sure but as the doc said when my annual deductible is met it becomes free for the rest of the year and will no longer present an issue even if changing insurance companies

    Anyway, very low dose. They feel the key is low dose slow titration as the window for success vs nasty side effects is small. They will not even utilize the approved trial (spinal catheter in hospital for 3 days) as the external pumps used deliver an immediate dosage most cannot handle.

    So i was told to have limited expectations for significan pain relief from this pump refill and if all goes well the next refill will increase the dosage and repeat til success/failure and hold.

    Most unusually there were 2 other prialt users getting pump refills. no contact in office due to privacy, even though we could hear each other, but i waited outside the office nad approached both 1 male one female. Female heard me ask about her and also asked about me but no real info given either way.

    She's been on it almost 2 years took 6 month to find benefit 6 more months of increase, 1refill that had her a bit "fuzzy" emptied and refilled at the prior lvel and stable since.

    is taking NO other meds for pain and was on the cocktails of antidepressant category, baclofen and narcotics in her pump and orally and they have tapered everything down. no ani-depressants, no narcotics,nothing, she (and her husband present) said she had her life back)

    the male was not so forthcoming other than to say it is the only thing that has given any relief had been on it over a year and once the dosage was established was satisfied and no side effects.

    To me seem dosage and how to get there is key.

    one important fact the docs shared is some people cannot tolerate it at all, some get no relief before side effects, some get good enough results and a lucky small group get almost complete relief.

    I will continue to post on this topic as it unfolds.

    fwiw, with the baclofen bump this refill i slept last night almost 6 hours 4 + 2 been a really long time since i slept

    ket
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

    #2
    I truly hope this is the one that is going to make a difference.

    Comment


      #3
      Originally posted by LindaT View Post
      I truly hope this is the one that is going to make a difference.
      x2! Glad your doctors were able to communicate with the insurance company. It sounds like they are well informed about the med and how to approach the dosage issue.
      MS with cervical and thoracic cord lesions

      Comment


        #4
        Good luck, man. I hope you eventually get some relief from this.
        Alan

        Proofread carefully to see if you any words out.

        Comment


          #5
          Hi KK (Bolefen) - if this Prialt works and you ride off into the sunset on your horse all better and painless, will you from time to time come by here and say howdy to the rest of us in Dante's 3rd ring of hell? ;-)

          I wish you the best as always.

          Comment


            #6
            Originally posted by arndog View Post
            Hi KK (Bolefen) - if this Prialt works and you ride off into the sunset on your horse all better and painless, will you from time to time come by here and say howdy to the rest of us in Dante's 3rd ring of hell? ;-)

            I wish you the best as always.

            He'll, if it works we'll all try it so we can be Roy Rodgers too!
            2012 SCINetUSA Clinical Trial Support Squad Member
            Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

            Comment


              #7
              Glad you got some sleep.

              Comment


                #8
                Thanks for the report, glad you're getting relief. If you see the woman again feel free to invite her to come here and report on her experience. Do you know what condition led her to use Prialt?

                Comment


                  #9
                  I did inquire about the underlying condition, volunteering my own but she was unwilling to share, I also recommended the board to a few, her included, who have not joined.
                  Kindly,

                  The Ketamine Kitty

                  All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                  Next time I die make sure I'm gone,
                  don't leave 'em nothing to work on JT

                  And I ain't nothin but a dream JM

                  Comment


                    #10
                    I have no real updates, currently pain remains intolerable, 8-36.8. Nausea, but got a large increase in baclofen so unsure of its origin, I know i get this for the first week after a large baclofen increase so...

                    ket
                    Kindly,

                    The Ketamine Kitty

                    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                    Next time I die make sure I'm gone,
                    don't leave 'em nothing to work on JT

                    And I ain't nothin but a dream JM

                    Comment


                      #11
                      kipee yi yi yay

                      If thsi works i will travel again gallop into town swill a few beers, rope some cattle, ride a heifer (in my dreams) and generally raise a rucus.

                      thanks for the well wishes

                      and from all, will be updates as availabe.

                      ket


                      Originally posted by arndog View Post
                      Hi KK (Bolefen) - if this Prialt works and you ride off into the sunset on your horse all better and painless, will you from time to time come by here and say howdy to the rest of us in Dante's 3rd ring of hell? ;-)

                      I wish you the best as always.
                      Kindly,

                      The Ketamine Kitty

                      All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                      Next time I die make sure I'm gone,
                      don't leave 'em nothing to work on JT

                      And I ain't nothin but a dream JM

                      Comment


                        #12
                        Do u have prialt and baclofen in your pump at the same time?

                        Comment


                          #13
                          sorry the delay, yes both baclofen and prialt in the pump

                          ket
                          Kindly,

                          The Ketamine Kitty

                          All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                          Next time I die make sure I'm gone,
                          don't leave 'em nothing to work on JT

                          And I ain't nothin but a dream JM

                          Comment


                            #14
                            I truly hope this is the one that is going to make a difference.

                            Comment


                              #15
                              bollefen where in the spine/level did they connect the pump? I wonder if it would help me a C 4/5 complete with my pain in my back, hip and stomach.

                              i know this will sound stupid but what type of pain do you have and where?

                              I'm prayin it works for you..
                              Courage is being scared to death but saddling up anyway. .(John Wayne)

                              Comment

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