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Does anyone know the name of the newly FDA approved drug for muscle weakness?

Discussion in 'General Treatment' started by Mya Symons, Jul 6, 2010.

  1. Mya Symons

    Mya Symons Mya Symons

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    I was reading an article the other day. The article stated the FDA approved a drug to treat muscle weakness in persons with CFS/FMS. Unfortunately, I did not save the article and I cannot find it on the internet any longer. Has anybody read about this and remember the name of the drug?
  2. Chris

    Chris Senior Member

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    I know nothing of this, but I think it is not so much muscle weakness that troubles us CFSers as muscle fatigue--our anaerobic system still works, more or less--it is our aerobic energy system that is screwed up. I can still lift a modest weight--but I can't walk more than about 17 mins at a fair pace without triggering PEM. Any more info welcome! Chris
  3. Athene

    Athene Never give up

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    I definitely have muscle weakness as well as muscle fatigue and I do think it is part of CFS. I cannot even snap open a plastic bottle of mineral water.
    It is not deconditioning/muscle wasting either, as it varies from day to day or even hour to hour, and there is no vbisible loss of muscle volume. I acutally look fairly fit and toned. How deceptive!
    I'd be a bit scared of a drug for this though as it sounds like the type of thing that would have many side effects. But I'd be interested to learn more if anyone can track it down.
  4. sleepy237

    sleepy237 Senior Member

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    Hell
  5. traffy

    traffy [banned as spam]

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    It depends on whether or not they are making any claims that the product will treat or cure any condition. If they are, then the FDA requires:

    "It is the responsibility of the company seeking to market a drug to test it and submit evidence that it is safe and effective. A team of CDER physicians, statisticians, chemists, pharmacologists, and other scientists reviews the sponsor's NDA containing the data and proposed labeling."

    If it is a supplement that is not making such claims, then:

    "the dietary supplement manufacturer is responsible for ensuring that a dietary supplement is safe before it is marketed. FDA is responsible for taking action against any unsafe dietary supplement product after it reaches the market. Generally, manufacturers do not need to register their products with FDA nor get FDA approval before producing or selling dietary supplements."

    So the only products that the FDA actually "approves" are drugs and high-tech medical devices. Other products may be "listed" or "registered" with the agency, but that's a big step down from actual approval.
  6. Mya Symons

    Mya Symons Mya Symons

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    I swear the article also said this medication upped Human Growth Hormome and was originally used for another muscle disease. But the article has disappeared. I am definately going to start saving these on my computer.:)
  7. Otis

    Otis Señor Mumbler

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    I'm going to hazard a guess that it was pyridostigmine. I was just reading about it.

    According to my handy-dandy copy of Reviving the Broken Marionette (thanks to Andrew for the recommendation) it's primarily used for myasthenia gravis.

    Here's a little info from the book.

    According to the book it's used for "muscle weakness, muscle aches, fatigue and brain fog" by Jay Goldstein.

    Doses in limited studies appear to be in the 30-120mg range and it is apparently much lower than for myasthenia gravis dosage levels.

    Some limited studies have shown promise in increasing growth hormone and is finding some use in OI and POTS.

    Google will probably yield much more info, assuming I've guess correctly.

    I've got low HGH due to getting no slow wave sleep and I've recently developed POTS so I want to give it a try.

    Otis
  8. Mya Symons

    Mya Symons Mya Symons

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    Otis, yes, that is the name of the medicine and the disease it is used for. Have you heard whether or not it is FDA approved? My doctor, like most, will not prescribe anything that is not FDA approved for FMS or CFS. Unfortunately, it is really hard to find a doctor who is willing to try anything out of the norm for these illnesses.
  9. Otis

    Otis Señor Mumbler

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    Forgot about the FDA approval part. It's definitly not approved for FMS or CFS. There are only 3 for fibro and none for CFS. Like most treatments it's off-label for us.
  10. Tammie

    Tammie Senior Member

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    Woodridge, IL
    I do not generally put much faith in wiki; esp considering the way it has been incredibly inaccurate re CFS; however it actually says that pyridostigmine may be implicated in Gulf War Syndrome.....the only reason I think this may actually be accurate is that acknowledging GWS, and not only that but the possibility that a drug may be partially to blame, seems so atypical of wiki it could actually be true

    if there is any merit to that thought, then someone with CFS taking it would probably not be wise, considering the major similarities between GWS and CFS
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Have you tried the Co cure site? http://www.co-cure.org/USA_WY.htm

    Might want to also try this website: http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5420171/k.7A8D/ACAM_Homepage.htm and if the "FInd a Physcian..." link does not work try "contact us" my dr is on both of these websites and he prescribed me LDN.
  12. klutzo

    klutzo Senior Member

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    If you would like to try something natural and safer first, try Creatine powder.

    It is used in huge doses by body builders, and can also be used at much smaller doses to help old people to be able to open jars, get up out of chairs by themselves, etc.

    I figured that I feel like I am very old, so I tried it. It was a miracle. I was able to start doing a weight lifting routine without pain within a week, using many reps with small weights, so as not to rip my tight muscles from Fibro. I can now carry a full watering can in the garden. I never could have it more than 1/3 full before.

    I've been told those who eat a lot of meat will not get much benefit, but I am mostly lacto-vegetarian and only eat a little meat. Still, I think it is worth trying, even if you eat a lot of meat, since a huge jar only costs about $25.

    Dr. William Douglass has written a lot about using creatine to increase muscle strength in those who can't exercise so they can remain more independent in their old age. He is quite a maverick and hates to exercise. He says creatine is just as good. I don't know about that, but it sure helped me to be able to exericse more and handle more daily duties without resting.

    I take 5 grams, 3 X week, before working out. That seems to be enough for me.

    klutzo

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