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

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    #31
    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.
    is this something that only works while you take it? or do you still have that feeling that returned? also, how long after injury did you start taking it?

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      #32
      Originally posted by Barrington314mx View Post
      is this something that only works while you take it? or do you still have that feeling that returned? also, how long after injury did you start taking it?
      Works while you take it, after a while though the effects, if it affects you are not short lived, I've run out for a few days and it's more difficult but not impossible to achieve the same results of walking/feeling. Try it, and if your lucky you could be the %33. Otherwise you've nothing to lose.

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        #33
        Originally posted by kz View Post
        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 .
        kz, I don't know anybody with ASIA complete T2 spinal cord injury who has gotten function and feeling back from taking Ampyra. Acorda carried out a clinical trial but only on patients who are "incomplete". While there were some patients with SCI who reported having some functional improvement, when Acorda compared the control placebo treated group with Ampyra-treated group, they found no significant difference in spasticity, motor, or sensory scores. This was a big study, involving nearly 800 patients. In contrast, Ampyra had a very significant effect on walking speed and scores of patients with multiple sclerosis. That is why the FDA approved Ampyra for MS but not for SCI.

        Wise.

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          #34
          ClinicalTrials.gov Identifier:NCT01621113. Does this mean Acorda is taking another look at this medication?

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            #35
            I still have the return and the pain is less but still have nerve pain. I have TM i started taking it 3 years after my injury......
            For every minute you're angry you lose a second of happiness

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              #36
              Dr. Young ,
              Thanks so much .

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                #37
                aaaaaaaaaaaaaaaaaaaargggggggggggghhhhhhhhhhhhhhhh.

                Someone get me a new wall I destroyed the last one banging my head against it.

                2 years ago, I printed out Dr. Wise's documentation and showed it to my spinal doctor in Seattle, no problem he writes me a prescription.

                The FDA approves Ampyra, and my compounding pharmacy tells me they will no longer supply the compounded version I have to use Ampyra, fair enough sounds reasonable, till I see the price of the Ampyra.

                I hear some people are getting ampyra paid for by their insurance, and I am now living Portland, figure I will get the ampyra prescription and see
                if I can get it covered on insurance. My new doctor writes me an ampyra
                prescription, insurance denies it and I am now appealing the decision.

                In the mean time I notice other people are still getting 4-ap, so curiously
                phone a handful of compounding pharmacies in the area to see if they'll compound it and what the cost would be. Low and behold they'll compound the immediate release formula, and it's very reasonable, I
                was quoted $43 a month. All I need now is a prescription for 4-AP.

                Go back to my doctor, she knows nothing about 4-ap never heard of it,
                fair enough I send her all the documentation Dr. Wise put together. It
                is not in her prescribing manual and she does not feel comfortable prescribing it. Even though she can see my previous doctors notes where he did prescribe it. She then tells me we're at an impasse and hangs the
                phone up on me.

                You've got to be kidding me! I've got to drive 400 miles round trip to Seattle to see my old doctor?

                People of Seattle, Harborview freaking rocks for SCI.

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                  #38
                  NW-Will,
                  Funny thing happened, not really, My insurance co. approved it, the pharmacy "Curascript" refuses to send it, because they are "waiting for a few more *&^%%^& there is nothing you need to do" recordings to me. I run out, I call, they are waiting for Connecticare? to answer. I don't live in Connecticut, I live in NY bozo's, I have Emblem GHI, 2 days and I finally got Acorda to conference call to help straighten these people out. Every month I go through this with this s*&t prescription outfit my insurance co. deals with. I'm ordering next months now so MAYBE I can have it on time for August.

                  If you find a spare wall, send it to the east coast. Yeah it's covered, but is my anxiety meds I need dealing with them????

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                    #39
                    9 mg capsues???

                    I haven't taken 4-AP in years but I am ready to begin again. I went to my neurologist (new) and asked for a script - 10 mg 4 times a day. Fine. I gave her name of a local compounding pharmacy and she sent it right over. HOWEVER, the pharmacist said he can't do 10 mg capsules but he can do 9 mg. What is that about? Says only designated pharmacies can do 10 mg. Do you think missing 4 mg a day can make a difference? Should I look elsewhere?
                    Karen M
                    C 3/4 inc. central cord
                    10/29/1992 - 18 years, but who counts?

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                      #40
                      So you have to get it compounded?
                      sigpic

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                        #41
                        I thought once it was marketed, they couldn't compound it? Not sure how your laws work there since compounding is rare here in Canada. Perhaps that's why the 9mg?
                        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                          #42
                          Karen, You might want to talk to the pharmacist. I'll bet that it's 9 mg of 4-AP and 1 mg of cellulose as a filler. When someone tested a lot of samples compounded at different pharmacies the range of 4-AP was from 7.7mg to 12.8 or something like that. Can you get 3 X 15 mg?
                          Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                          Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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                            #43
                            Thanks, Sue. I'll talk to the pharmacist again.
                            Karen M
                            C 3/4 inc. central cord
                            10/29/1992 - 18 years, but who counts?

                            Comment


                              #44
                              Originally posted by Mona~on~wheels View Post
                              So you have to get it compounded?

                              Yes, 4-AP is a compounded medication.

                              That is one of the reasons why it can be "variable" from pharmacy to pharmacy. My Dad notices variability from capsule to capsule at times! Some are filled more/less then others.

                              The short acting 4-AP can still be compounded. Only the long-acting sustained release 4-AP can no longer be compounded, since it is essentially the same as Ampyra.

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                                #45
                                If I close my eye I'm jumping around the house doing a JIG...

                                Received a phone call from Medicare today... The appeal was successful, they will pay for Ampyra!!!!!

                                I still can't believe it!!

                                Now just to find another spinal medicine doctor.

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