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Thread: Rmyelinating drug already FDA approved

  1. #11
    Unfortunately, though my doc prescribed it to use at night, I can't get it because competitors bought it out a year or so ago and it's unavailable by script or over the counter in US at least. Compound pharmacy here would charge exorbitant price so I asked an Aussie friend with a chemist friend and also a quad if he could make the drug to see if it helps us. I guess my friend is looking around for it first. Clemastine fumurate seemed like a good idea to my physiatrist and so hopefully I'll be able to try it without too much expense. Just a couple years ago it was a popular generic drug called Tavist D...

  2. #12
    Quote Originally Posted by Mitchitsu View Post
    IMO, there's about the same information out there about 4 - AP. Some preliminary work for SCI and then nothing. Just disappears. Not sure if that means it was ineffective or the work was never done. There are trials that say they are completed but no information / results can be found.

    Maybe I will turn myself into a lab rat and take both at the same time combined with locomotor training and hope for the best.

    Already tried 4ap. Got it compounded at my local pharmacy w a script. I wanted to try 4ap3MeOh next and maybe cobine with drug from this post + standing frame regimen + topical stim (empi)

  3. #13
    As I remember, the 4-AP studies done in the USA as part of the FDA approval process included both people with SCI and MS. Unfortunately, the outcome measure selected was increase or improvement in ambulation (walking), and not in other areas such as B&B function or sensation. The MS group showed a significant improvement in ambulation, while the SCI group did not, which is why the drug received FDA approval for people with MS only. Correct me if i got this wrong.

    (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.

  4. #14
    Senior Member Tim C.'s Avatar
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    [QUOTE=George78;1886431]Hello, in spinal cord injuries I guess myelin sheath has been damaged from a trauma so there are no further worsening effect.
    This may provide a way to restore myelin sheath in scies once for all..
    I think it may be worth to give a try, may be some recoveries, less chronical pain, less spasticity..
    Do we know something about clemastine regarding that ?..
    Besides there's not need to take it lifetime, do we know how many times it takes to remyelinate ?..
    Is it a question of weeks or years ?..
    Let's say it takes 3 months to get maximum effect from clemastine, I'm ok to order and give a try.

    I'm right behind you george78
    nothing to lose at this point.

  5. #15
    Quote Originally Posted by wesmaister View Post
    Already tried 4ap. Got it compounded at my local pharmacy w a script. I wanted to try 4ap3MeOh next and maybe cobine with drug from this post + standing frame regimen + topical stim (empi)
    if you don't mind me asking, do you have an incomplete injury or complete? Are you able to ambulate at all?

    Do you feel like the 4 AP helped you in any noticeable way?

    I'm asking because I'm in this spot where I feel like if I was just 10% to 20% stronger I would be completely functional.
    Just need to get over the hump. Hoping one of these silly drugs can push me there

  6. #16
    Yes, 4-AP was approved for MS only, but it does help people with hih-level, inc sci like me. There weren't enough of those people participating in the trial. 4-AP-3-mEoh works even better. So I see I can get clemastine at Walmart with online special discount so it'll cost me about 5 dollars. Just need to take script to walmart pharmacy. 'It's the lower dose for a month...

  7. #17
    https://www.goodrx.com/coupon?pharma...65&quantity=30


    Here's link to online ticket for printing...8 dollars today but am sue it was 5 yesterday.....

  8. #18
    Quote Originally Posted by FellowHawkeye View Post
    https://www.goodrx.com/coupon?pharma...65&quantity=30


    Here's link to online ticket for printing...8 dollars today but am sue it was 5 yesterday.....
    I didn't bother trying to get a script. I found it online from some shady seller. $50 for 100x 1.3mg pills.
    I'm going to take 6 a day. Obviously I will need to order it a bunch of times since it will only last a couple of weeks at 100 pills per order.

    Going to try it for 3 to 5 months and report back.
    Took the first 3 pills this morning. Not jogging around the house yet LOL.

  9. #19
    6 a day? You'll be so drowsy all the time. If you don't walk or work, I guess it's not going to hurt you much, but it seems excessive. I'll be getting mine finally tonight. Hope it works for you, mitchitsu!

  10. #20
    Quote Originally Posted by FellowHawkeye View Post
    6 a day? You'll be so drowsy all the time. If you don't walk or work, I guess it's not going to hurt you much, but it seems excessive. I'll be getting mine finally tonight. Hope it works for you, mitchitsu!
    I started October 1st so it's been a little over a week.
    The first couple of days it might have made me a little more tired then usual. But it was nothing significant. Now I don't notice it at all. I cannot report any side effects yet.

    I do walk on a treadmill but not community yet... it does not seem to have affected that at all.

    Please keep in touch here and let us know how it is going. I will definitely do the same. Good luck to you as well!

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