Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Anyone tried Pyridostigmine

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by redaxe, May 19, 2015.

  1. redaxe

    redaxe Senior Member

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    So I went to a cardiologist some time back asking for a beta blocker to bring my tachycardia down that was diagnosed by a CFS specialist.
    The cardiologist to my initial displeasure didn't think betablockers were the right thing for me because he thought my heart rate at rest was low enough but he did suggest I try Pyridostigmine which for me made this a very useful consultation and I left feeling quite elated.

    Apparently it is a drug that some doctors have been using 'off-label' for unusual cases of fatigue. He couldn't easily explain to me the entire mechanism of action only that he had patients with unresolved fatigue that improved on it and had heard abouts its value from colleagues at an academic conference for cardiologists.The correct dosage is difficult to determine but you could start with 60mg daily and go up to 120mg if needed.

    Now I'm not sure if the mechanism of action actually directly reduces the heart rate or if it helps the blood vessels function better. The cardiovascular system is a pretty complex system of plumbing. From what I gather pyridostigmine can help constrict blood vessels at the right time which increases blood pressure when you need it - i.e. standing up quickly.

    So I think it takes pressure of the heart because with more efficient blood vessel function the heart isn't under as much pressure to force blood pressure up to compensate by elevating heart rate. I presume this would lead to better blood circulation in the body which would improve muscle function and possibly benefit cognition. It is all about getting blood moving around the body more effectively so better blood vessel function may help not just with orthostatic intolerance but possibly with cognition, cold/heat intolerance, dizziness, tachycardia and possibly a whole host of other bodily functions.

    It has minimal side-effects and seems to be a highly focused drug that only works when needed rather than hitting your body with a sledgehammer like beta-blockers would.

    My experience has been quite valuable in treating orthostatic intolerance and anecdotal observation is that my heart rate seems a bit steadier and less prone to the tachycardia events that my CFS specialist picked up on.

    That said I can't provide a full summary of my symtpoms because I've been trying to push isoprinosine and Valcyte to treat persistent HHV6 and these drugs can cause a worsening of symptoms until the virus is suppressed. So with so many drugs I'm taking It's difficult to work out what each pill is doing.
    But for someone with CFS there seem to be many problems that cause multiple layers of fatigue but taking Pyridostigmine is something you could discuss with your doctors that might make life a bit more comfortable. Of course you have to be careful with pacing. If you do get a sudden lift from pyridostigmine you have to be careful and re-evaluate how much energy you can use before over-doing it.
    Anyway here's an article that discusses this drug in a bit more detail.
    http://www.ninds.nih.gov/news_and_events/news_articles/news_article_orthostatic_hypotension.htm
     
    Last edited: May 19, 2015
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  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Looking at medline the recent response seems pretty lukewarm - largely on the basis that good trials have not been done. One says of midodrine and pyridostigmine 'Several vasoactive drugs-including midodrine and pyridostigmine-improved the standing blood pressure, but overall worsened the postural drop.' which does not sound too good. Raising blood pressure is not something I would want to encourage unless there was solid evidence for benefit. It seems a pity that this has not been followed up in more detail. The original account just says blood pressure went up after an hour with two treatments that included pyridostigmine - but strangely not the treatment with the half dose of midodrine included.
     
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  3. waiting

    waiting Senior Member

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    @Jonathan Edwards, what do you think about this recent study which made media headlines connecting antichilinergic drugs & Alzheimer's risk -- pyridostigmine is not mentioned but isn't it in that class?
     
  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am not sure what you are referring to. Drugs like Aricept, used for Alzheimer's are in this class I think.
     
  5. waiting

    waiting Senior Member

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  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    waiting likes this.
  7. lansbergen

    lansbergen Senior Member

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    I decided that a long time ago.
     
  8. Marco

    Marco Grrrrrrr!

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    Near Cognac, France
    Interesting given that one explanation of Gulf War illness is exposure to cholinesterase-inhibiting agents (inc Sarin) with cardiovascular and autonomic symptoms (and others) similar to ME/CFS :

    Cholinergic Autonomic Dysfunction in Veterans With Gulf War Illness

    http://archneur.jamanetwork.com/article.aspx?articleid=1397621

    Gulf War illness linked to nervous system damage

    http://www.utsouthwestern.edu/newsr...3/january/gw-autonomic-dysfunction-haley.html

    Not to mention cholinergic autoantibodies in myasthenia gravis and myasthenic syndrome (where pyridostigmine is one of the preferred medications).

    Maybe he's on to something?
     
  9. redaxe

    redaxe Senior Member

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    Thanks for weighing in to this thread. So you're general thought is that potential risks of the drug outweigh the benefits? Sorry I don't understand well enough the science behind the mechanism of action of this drug myself so I can only listen to the advice from experts.
     

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