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Mestinon Trial of 1

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by mattie, Jan 22, 2018.

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Have you tried Mestinon for POTS?

  1. Yes and it helps, I still take it

    7 vote(s)
    15.2%
  2. Yes but it dit not help.

    6 vote(s)
    13.0%
  3. Yes, but I had to stop because of side effects

    5 vote(s)
    10.9%
  4. No I have not tried it

    28 vote(s)
    60.9%
  1. mattie

    mattie Senior Member

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    A bit late, but I promised to report about Mestinon Trial (@echobravo)
    My new GP takes M.E. seriously. :thumbsup:

    Not only that, he allows me to trial Mestinon without going through a specialist which would be the normal route for this kind of off-label medication use.

    It works well for a subgroup of POTS patients and also PWME have reported benefits.

    https://www.healthrising.org/blog/2...nic-fatigue-vagus-nerve-stimulation-exercise/

    Prescribed dosage varies a lot, from 10mg to 180 mg or even more.

    I will start low. So today: 5mg
    No noticeable effects so far.

    I will update this thread and report of benefits vs side effects as I keep increasing the dosage.
    I wanted to keep the poll options limited (simple). But let me know if you want me to add options.
     
    Last edited: Jan 22, 2018
    Mel9, Dechi, Eve18 and 8 others like this.
  2. mattie

    mattie Senior Member

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    Day 2: 10 mg (2x5)
    No noticeable effects good or bad.
    No change in upright tachycardia.

    Day 4: now on 3x10mg
    tachycardia has decreased a bit.
    No side effects.

    Will switch to weekly update or in case of significant effects.
     
    Last edited: Jan 27, 2018
    pattismith and sb4 like this.
  3. mattie

    mattie Senior Member

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    Now on 3x20mg daily.
    POTS definitely improved, standing tachycardia reduced with 20-30bpm (!)
    Also more energy during the day.
    Body / Brain feels calmer. Parasympathetic nervous system kicking in I guess.
    Side effects: none so far.
     
    Last edited: Jan 30, 2018
    Mel9, MEMum, Marylib and 5 others like this.
  4. EMilo

    EMilo Elizabethmilo.com

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    Seattle, WA
    I just started at about 7mg. It feels like I was hit by an acid freight train. Not a fun one. It's scary.
     
    mattie likes this.
  5. mattie

    mattie Senior Member

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    wow thats not a nice start.
    With so strong a reaction to such a small dose I would consult my prescriber.
    This med clearly will not work for everybody and PWME can be very sensitive to medication. I know I am.

    Due to heavy flu I am not upping my dose for now. Impossible to measure effects right now.
     
    EMilo and pattismith like this.
  6. Eve18

    Eve18

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    Are you taking any other medications for POTS like beta blockers or fludrocortisone?
     
  7. mattie

    mattie Senior Member

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    I've tried clonidine and fludrocortisone. Could not tolerate either one.
    I have been on propranolol 2x10mg dd. It helps a little bit with standing tachycardia but not much.
    Mestinon for me is clearly more effective not only in lowering standing tachycardia but also with the things I've stated earlier.
     
    Mel9, Eve18 and sb4 like this.
  8. mattie

    mattie Senior Member

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    Update:
    Took me a while to recover from a serious flu.

    As for the Mestinon: I was not able to build up to more than 60mg a day.
    At 60mg a day I regularly experienced bradycardia. (<50 bpm).

    Tried different dosages below that 60mg and setlled for 2x10mg a day.

    It still helps with lowering standing tachycardia; for me it works better than propranolol.
    It also gives a bit more energy but in no way does it prevent or lessen PEM for me.

    So all in all no spectacular results,
    I will sitick with 20mg a day for now...
     
    Mel9, MEMum, Marylib and 2 others like this.
  9. Marylib

    Marylib Senior Member

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    New Zealand
    I have only been on mestinon for a week, but am very happy with it. My mind is more clear, less fatigue in general, my dry eyes are much better, and no constipation. Only side effect for me is frequent urination, but POTS is doing well with IV saline and ivabradine. Am on 30mg. three times a day. I feel very fortunate and hope this lasts!

    I am not increasing activity or "exercise" at all - I have learned my lesson about this many times over.
     
    Sing, Mel9, Eve18 and 2 others like this.
  10. RYO

    RYO Senior Member

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    I am starting trial of mestinon 30 mg next week. I am hoping it helps...
     
  11. Dechi

    Dechi Senior Member

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    I asked my doctor if he would prescribe it but he said it was a very serious drug to take and wouldn’t do it.

    As I am declining though I might try again eventually.
     
  12. RYO

    RYO Senior Member

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    I titrated to pyridostigmine 30 mg three times daily over a week. It definitely seems to be helping but I will until 4 weeks to fully assess its effects. So far, I've experienced some GI side effects but not severe enough to stop medication.
     
    Mel9, MEMum and Eve18 like this.
  13. Eve18

    Eve18

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    How are you doing? Positive effects?
     
  14. RYO

    RYO Senior Member

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    @Eve18
    It seems to be helping. I tried to increase dose to 45 mg 3 x daily but I had to go back to 30 mg. In general, I think pyridostigmine has the possibility of addressing one aspect of this illness. I believe an immunomodulator is also necessary. IVIG may be one option but hopefully additional drugs will be investigated and prove to be effective. Lastly, the new drug Cortene may one day be a part of multi drug treatment plan for ME/CFS.
     
    Sing and Eve18 like this.
  15. Eve18

    Eve18

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    It’s so hard to get IVIG prescribed and approved.

    I’m glad to hear that Mestinon is helping.
     
    RYO likes this.
  16. Learner1

    Learner1 Forum Support Assistant

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    Pacific Northwest
    I've been on 10mg pyridostigmine plus 10mg propranolol 3x daily for several months. They have helped me to stand up better, not be dizzy, and slowed my racing heart and BP.
     
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  17. RYO

    RYO Senior Member

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    I totally agree. I am currently trying 12 day course of prednisone. It's not a long term treatment strategy but it does help with chronic neuropathic pain. I have been reluctant to use steroids in the past but my impression is that research so far may suggest autoimmune etiology vs chronic indolent viral infection.

    Usually my eyes get puffy and it feels like I have lid lag. My family members have noticed my face looks more normal since starting pyridostigmine. I still get PEM but it seems to be less severe. I am hoping to maintain the mild improvements.

    (Prednisone interacts with pyridostigmine - makes it less effective if taking higher doses of prednisone)

    However, there may be drugs currently being used for autoimmune diseases that may be helpful for ME/CFS.
     
    Last edited: Aug 27, 2018
  18. Eve18

    Eve18

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    Do you mean 10 mg pyridostigmine per day or also 3x daily?
    Do you see only improvement in POTS/OI or also with other symptoms?
    Thanks.
     
  19. Learner1

    Learner1 Forum Support Assistant

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    The pyridostigmine is 3x daily as well, taken at the same time as propranolol. It helps the POTS/OI symptoms, dizziness, and exercise and heat intolerance.
     
    Mel9 likes this.
  20. Eve18

    Eve18

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    I’m glad that it helps you. Great to know that it also helps wit exercise and heat intolerance.

    I’ve just got scripts for both. Right now I’m on different beta blocker. However I was prescribed 60 mg pyridostigmine 3x daily. Thanks to all comments I will start with much lower dose.
     
    RYO likes this.

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