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    #16
    Originally posted by onrycowboy67
    Does this stuff do anything? I'm c3-4 inc.........thanks
    Did you read any of the previous messages on this thread??

    If you haven't read this article by Dr. Young, this is a good place to start:

    /index.php?page=viewarticle&afile=5_September_2005@ 4aminopyridine.htm

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      #17
      Great info they only way to know if it works for you is to try it under Medical Supervision.

      Comment


        #18
        Hi everyone,

        After a great deal of study, including reading all of the amazing and valuable information on this site, my husband, Raymond, C5 incomplete, 1.5 years post, has started 4-AP. He began last week, 10 mg, 2x a day.

        The day he started, he came down with the flu, but now that he's better, he can feel that the 4-AP is "doing something." He said he felt as if he had consumed a "barrel of coffee," and he also said the tightness he typically has in his chest and mid-section has become more tight. He says the tingling is also really intense.

        We weren't sure what these symptoms meant, and he called his doctor, who is out of town, so he will discontinue the 4-AP until his doctor returns next week and he can consult with him.

        Of all the things I've read -- and I have tried to read everything, especially all the info on this website -- the hyper-intensive feeling, the tightness, and super-tingling do not seem to be cited by others (although maybe I am reading things wrong). The closest I found are the posts that suggest 4-AP may cause difficulty sleeping.

        The 4-AP is definitely doing something, and maybe it's something you get used to as you ramp up (he did say he could feel more and felt a bit stronger), and we'll talk with his doctor, but in the meantime, how do members who take the drug remember their initial experiences? Were you hyper, tighter, et cetera? I am really hopeful that this drug can help him, but I also don't want to make some things worse while helping other things.

        Thank you for your ideas and suggestions; we have learned so much from this website!

        Julie

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          #19
          Hi Julie - thank you for sharing your experiences.
          "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

          Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
          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
            Hi Julie,

            I have tried 4-AP a few months ago. First with 5mg and ramp up to 10mg, the result is I feel very tired, not from taking 5mg, but from taking 10mg. So I talk to my doctor and reduced it down to 7.5mg. I got the same result with 7.5mg, feeling very tired, so I stop taking it now. If I get even some benefits from taking the drug, I would have keep on for a little more longer, but I see no changes or improvements to my condition. By the way, I sufferd SCI at T-11 incompleted from removing a begnin tumor (Schwannomas) from my spine in 2006. Right now I am waiting for FDA to approved Fampridine SR sometime this year and will try again. Hope for better result this time around.

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              #21
              Originally posted by JamesBL View Post
              Hey bw I started 4ap about a month ago. The medication has had several possitive effects on me. The only warning I have would be to make sure not to take 2 doses in a short period of time. When I once took 2 pills in a 3 hour period I noticed some unpleasant side effects. I wouldn't worry too much about reaction to alchohol. I got piss drunk at a party last week and the problem I noticed was a nasty hangover. Good luck!
              Hey bw I stared 4ap about a week ago and having problem's sleeping. Wondering about drinking on it. As I would go out one a week to drink with friends????????

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                #22
                Hi,
                I start with 2x5mg 4-AP and ramp up to 4x5mg 4-AP
                More I think is not good because time released AMPYRA is only 2x10mg/day
                I think the studies of Joung in 2004 with 40mg are not up to date.

                Regards
                UWE

                Comment


                  #23
                  Originally posted by Laura Ward View Post
                  Hey bw I stared 4ap about a week ago and having problem's sleeping. Wondering about drinking on it. As I would go out one a week to drink with friends????????
                  Laura,

                  The interactions between 4AP and alcohol are not well understood and depend on the dose of the 4AP and alcohol. At high doses, 4AP should increase the excitability of the nervous system, as well as the autonomic nervous system. That is why complications of 4AP include epileptic seizures and why 4AP is not recommended for people who have a history of seizures.

                  At high doses, alcohol tends to depress the nervous system although low doses may cause increased excitability of parts of the nervous system (due to disinhibition). So, the interactions of alcohol and 4AP will be quite variable and dose-dependent. My recommendation is to avoid using alcohol while you are on 4AP. I suppose that you can test small doses of alcohol when you are taking 4AP and see what happens.

                  Regarding the dosing of 4AP, the bioavailability of 4AP depends on the formulation. The effective dose also depends on the condition. In the case of multiple sclerosis, because demyelination is much more extensive in people with MS and people with MS have a higher tendency towards seizures, the doses recommended by MS are only 20 mg per day, usually in two 10 mg doses. Please remember also that the Ampyra is a sustained release formulation.

                  For spinal cord injury, as much as 40 mg per day (in four 10 mg doses) of the immediate release formulation have been recommended. The immediate release version achieves higher peaks and clears out more rapidly. Therefore, it produces more side-effects and more drugs are required to maintain a sustained serum level. One should not be comparing immediate release and sustained release.

                  Finally, I want to comment that two clinical trials carried out by Acorda Therapeutics showed no significant effect of Ampyra on spasticity in people with "incomplete" chronic spinal cord injury. It is true that the primary outcome measure was spasticity, as opposed to neurological function. It is also true that the studies were done on people with incomplete spinal cord injury and their neurological function is intrinsically much more variable. So, the efficacy of 4-AP in spinal cord injury has not yet been established.

                  Wise.

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                    #24
                    Wise, I was at wheel chair renewal today and saw a miricle. A young lady was there and found she had MS. sShe is taking Ampyra and has found improivements in her moving of legs and can retract her knees and stand for 1.5 minute. It is a complete change in her condition and it made me so impressed with the success of the drug and the change in her life.

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                      #25
                      Keeping on...this is so true. I have posted on here several times, David, my husband has been in a wheelchair for 4 1/2 years after his first MS attack, it virtually wiped him out. 8 hours after taking the first tablet of Ampyra he stood up, he had his arm around my neck and I had a death grip on him but he stood. Now it has been almost 4 months and he is standing for about 3 minutes at a time and transfering by standing to and from his chair and bed. Alot of it now is rebuilding muscle. Which is going to be another very long process. -- Lisa

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                        #26
                        MSWIFE1; God Bless you and your husband. what I saw was amiracle in the works. I could have hubbed this lady but was so amazed and so hopeful for all of us ; it was mind boggling. May your husband continue to progress and may all who have a chance for this recovery continue on. May wise's therapy be successful for spinal cord problems and may all get some improvement in their lives.

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                          #27
                          It really is a miracle. I cried and so did David. Now he is getting frustrated that he isn't walking yet but I really believe it is just going to take some time to rebuild those muscles. You know after not using them for so long its not going to be just get up and walk after taking a pill. I have told everyone I know about Ampyra and also sent a really long email to Acorda Theraputics thanking them for everything. Are you taking it as well?

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                            #28
                            MAWIFE1, I can't tell you how impressive it was that the lady could lift her knees and stand unassisted for 1.5 minutes. It tells me that good things are coming and we will see magnificent improvements for all. I hope!!!

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                              #29
                              MSWIFE1 I think I just enetered you as a friend. Try it and see.

                              Comment


                                #30
                                dr wise,
                                so taking 15mg twice a day is nt recommended? i shd make it 3 times a day? also im not sure if i take the immediate release or the sustained relief

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