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4-ap who's taken it & how has it helped you?

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    #16
    Originally posted by alhavel View Post
    Oh yeah I have medicare GHI, they couldn't wait to sign me, I can't believe they haven't tried to exterminate me yet.
    Thanks...

    Because you've been successful, asking a huge favor I know, if it is possible would you please ask what kind of things your doctor submitted to your medicare insurance to tilt the scales in your favor. Appreciate any help before I start working on this appeal. Cheers.

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      #17
      Flat, out, honestly, he just looked at the papers was familiar with it, I wanted to try it again, previously had the compound version and had been successful, and he wrote it for me.

      I had tried the compounded version 2 years prior, went off it befor going to court, and than waited for the acorda version so it would be covered.

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        #18
        Originally posted by NW-Will View Post

        I'm thinking of going back to compounded 4AP in the mean time, I recently called a few compounding pharmacists in the area to check pricing.
        Best price was Walgreens 1200mg a month $43 (120 * 10mg capsules)

        Mona~on~wheels, if you haven't tried 4AP, I would say try it. You really don't have much to lose and a lot to gain if you're one of the 33% it's effective for. Just read up on the side effects so that you know what to watch out for. Good luck.

        That's an excellent price. The best I have seen so far.

        Can you possibly post which Walgreens you are using? I wasn't aware that Walgreeens compounding pharmacies exist, and if they are able to provide meds by mail order, this may be a good place for others to order from.

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          #19
          Does anyone know where I can order 4 ap online without a prescription from my doctor?
          2010 SCINet 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.

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            #20
            Originally posted by Allan1 View Post
            Does anyone know where I can order 4 ap online without a prescription from my doctor?
            Allan1, Ampyra (the time-release formulation from Acorda) requires a prescription. Fampridine (4-AP) may still be available from compounding pharmacies but still requires a prescription. Wise.

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              #21
              I took 4-ap for 3 years it made me get feeling back and some strength in different places....i had to get off of it because of too much nerve pain.
              For every minute you're angry you lose a second of happiness

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                #22
                My father (SCI, Fractures at T11-12, L3 ASIA C, incomplete) started with short acting compounded 4-AP and saw increased bladder sensation, some improvement in bowel motility (moving things along), and he has continued to improve in PT for years. It did increase his neuropathic pain and he had to increase his gabapentin. He used a total of 40mg each day.

                He switched to 4-AP long acting, and found that his pain improved, there was a more steady improvement in the things listed above over the course of a day. Fewer peaks and valleys.

                Then Ampyra was released, and pharmacies were no long able to sell long acting 4-AP, since that is essentially what Ampyra is (they "own" the patent now). So we switched back to short acting 4-AP. He started having more pain, more bowel difficulties, and more falls/self-injury.

                His insurance (Blue Cross) approved Ampyra 10mg twice a day, with a doctor letter showing his prior results with 4-AP. However, it took us 6 months to win an appeal to get him back to the 20mg twice a day that he needed.

                Since the risks of 4-AP are fairly low, with seizure being the one we worried about the most, it seems reasonable to me for most people to try 4-AP once and see if there is any benefit. As we know, it is not a miracle drug that will pull most of us out of our chairs. But sometimes small improvements/changes can lead to improved quality of life.

                Since 4-AP is a lot easier to get then Ampyra, it seems like a reasonable place to start. Why fight for Ampyra, if it turns out not to have benefit in the end? Try 4-AP first.

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                  #23
                  Dr. Young ,
                  Hi, I know ampyra was approved fo MS , and you said it was not approved for sci. Personaly, do you think ampyra would help any body with chronic thoracic " complete" ASIA A , with neurogenic bowel and bladder spinal cord injury (contusion) to get some feeling and function back ? Do you know any body with chronic "complete" ASIA A , with neurogenic bowel and bladder thoracic spinal cord injury who is getting any function and /or feeling back as a result of taking ampyra ? do you think AMPYRA can help ASIA A " chronic complete" sci to get some feeling and/ or function back ? My injury is T2 "complete" asia a with neurogenic bowel and bladder . Do you think ampyra can help me to get some feeling and function back ? thanks .

                  Does anybody here with "complete" thoracic ASIA A , with neurogenic bowel and bladder contusion SCI take AMPYRA ? does it help you in any way to get some feeling and function back . If you do ,would you please share your experience with ampyra . Thanks .
                  Last edited by kz; 8 Jul 2012, 10:43 AM.

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                    #24
                    I dont no alot about 4-ap or how it works but apparently works for some people. Could this possibly be used along side of Dr Youngs trial? Would it make a difference?

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                      #25
                      I'm just learning about this and would love to try it. Any long term benefits?

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                        #26
                        [QUOTE=hlh;1552629]My father (SCI, Fractures at T11-12, L3 ASIA C, incomplete) started with short acting compounded 4-AP and saw increased bladder sensation, some improvement in bowel motility (moving things along), and he has continued to improve in PT for years. It did increase his neuropathic pain and he had to increase his gabapentin. He used a total of 40mg each day.

                        He switched to 4-AP long acting, and found that his pain improved, there was a more steady improvement in the things listed above over the course of a day. Fewer peaks and valleys.

                        Then Ampyra was released, and pharmacies were no long able to sell long acting 4-AP, since that is essentially what Ampyra is (they "own" the patent now). So we switched back to short acting 4-AP. He started having more pain, more bowel difficulties, and more falls/self-injury.

                        As far as I know they did not have to go through the appeal thing for me, than again I did get SSDI and never went before a doctor or a board, I must look like a lost cause!!

                        The 4-AP and the Ampyra co-pay is about the same , it's just that the Ampyra is long acting and I can forget about having to take it all day, like I did with the compounded version.

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                          #27
                          I have MS and have been takig 4-ap for years. I tried the 20mg time-release but prefer the 10mg fast acting. You need a script to get it but a 3 month supply, 180 capsules, is $83 including priority mail from Skip's Parmacy in Boca Raton, FL.

                          I can't imagine a co-pay for Ampyra being any cheaper, since co-pay on branded drugs are $40/month on my plan.

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                            #28
                            Originally posted by anty View Post
                            I took 4-ap for 3 years it made me get feeling back and some strength in different places....i had to get off of it because of too much nerve pain.
                            Ditto, Had the compounded formula. Only took it for 6 months while I was in an fes bike clinical study and it greatly enhanced my performance. But it increased my awareness of pain 10 fold. Plus after a dose it tasted like I'd chewed on a tin can for a few hours.
                            DIGG.

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                              #29
                              I regret that I can't buy this medicine in
                              China.

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                                #30
                                Originally posted by DIGGER View Post
                                Ditto, Had the compounded formula. Only took it for 6 months while I was in an fes bike clinical study and it greatly enhanced my performance. But it increased my awareness of pain 10 fold. Plus after a dose it tasted like I'd chewed on a tin can for a few hours.
                                True, the time released is a lot easier on your stomach, once I took the compounded version once or twice without water, HOLY C5&P, did it burn, but as for tin can taste, I like the taste of metal, than again I'm a metal worker-commercial fisherman. But when you want to get up and go, you must make sacrifices.

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