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  • Pyridostigmine Side effect or allergic reaction?

    Posted by Jennifer Thompson on March 2, 2023 at 3:19 pm

    I may have asked this before. I tried pyrogestimine last year and developed a raw burning mouth. I discontinued using it for 2 weeks and tried again and the same response. It’s not like it’s mildly sore, it’s pretty annoying/concerning. But once again after wanting some relief I talked to my neuro and they suggested 1/4 tablet to see what happens. And unfortunately the same thing. I took it for only two days. But, my question is has anyone experienced this? I don’t think it’s an allergic reaction but maybe burning mouth syndrome. I don’t know. The pyrogestimine did give me relief of weakness and I’m so bummed about the reaction. It may sound bonkers but sometime these things go away after using the drug for a bit. So I was wondering if anyone else had this issue?

    Kent Moore replied 7 months ago 23 Members · 30 Replies
  • 30 Replies
  • Lynette Wilson

    Member
    March 3, 2023 at 1:45 pm

    i take 360mg a day. I went down to  120mg a day. But my optical MG came back.  I am still taking prednisone with it. You may have an allergic reaction to Pyridostigmine. As I don’t have any trouble. It will be interesting if someone comes back to you with the same problem. As it does work for me. All the best

    • paul spychalski

      Member
      October 11, 2023 at 12:46 pm

      I Pyridostigmine 60ng 4x a day and my stomach and intestins are having a hard time w/it.

      Anyone else with same effects?

      • Ari Maayan

        Member
        October 11, 2023 at 9:48 pm

        I take 360 mg a day of pyridostigmine in 4×60 mg doses. Now comes what may be kickback from the drug or just the symptoms of MG. I have real bad dry eye in my right eye when I wake up in the morning. I’m sure it’s a symptom of the MG. It’s my ocular MG. I don’t use a CPAP or BiPAP, so there’s nothing blowing on the eye. It simply doesn’t close at night.

        The other thing is constant inflammation of the gums and roof of my mouth. Now, that might be because of the pyridostigmine. MAYBE. It won’t go away even though I use 2 therapeutic toothpastes. I’m stymied.

      • Charin

        Member
        October 20, 2023 at 2:24 pm

        Been taking pyridostigmine since 2006

        Never had an issue except minor stomach – and not really bothersome

        I ve taken up to 12 pills a day 60mg

        Now 5- a day no issues

      • Kent Moore

        Member
        October 20, 2023 at 2:42 pm

        I’ve been taking good ol’ Mestinon since 2017 — 90-120 mg every 4-6 hours. The only effects have been positive. Through the years, my neurologist and I have needed to add prednisone, but that’s been on as an as-needed basis (with careful tapering back). A couple months ago, we also began a monthly IVIG protocol, 2 days back-to-back, 500 ml each day. Feeling almost normal. The loss of half a day for each infusion is a bit of a pain, but I can speak for extended times and sing again! Amen.

  • Lynette Wilson

    Member
    March 3, 2023 at 1:45 pm

    i take 360mg a day. I went down to  120mg a day. But my optical MG came back.  I am still taking prednisone with it. You may have an allergic reaction to Pyridostigmine. As I don’t have any trouble. It will be interesting if someone comes back to you with the same problem. As it does work for me. All the best

  • Claire M Walsh

    Member
    March 3, 2023 at 2:41 pm

    I have been taking Mestinon for over 2 years now,  and  I have never  had that reaction. I believe my GI difficulties aren’t helped by this drug, but it does give symptom relief to me also. I am so sorry this is happening to you, Must be awful. Have you tried Vyvgart  infusions?

  • Kent Estes

    Member
    March 3, 2023 at 2:47 pm

    I am. 72 y/o male with a two year history of MG. I take 180 mg of Pyridostigmine (PB) each day along with 10 mg of prednisone.   When I first started on the PB I had issues with diarrhea… as my body adjusted to the PB the GI problems cleared up.   I’m sorry you are having allergic reactions.  It  be is the oldest, and simplest, of the MG meds.   Best of luck to you.

    • Pup

      Member
      October 14, 2023 at 8:17 pm

      Kent, I too have had GI issues with pyrodistigmine-take hyoscamine to assist, but now have had to stop them both. Read on this forum that “older” users may have the diarrhea issue. Unfortunate as the pyrodistigmine is the only drug that seems to help with double and blurred vision issues.

      I also take Soliris and prednisone.

      Does anyone else have experience with any other meds that might assist with vision?

      First diagnosed 10 years ago with ocular but have been gMG for over 8 years

      68 year old.

  • Kent Estes

    Member
    March 3, 2023 at 2:48 pm

    I am a 72 y/o male with a two year history of MG. I take 180 mg of Pyridostigmine (PB) each day along with 10 mg of prednisone.   When I first started on the PB I had issues with diarrhea… as my body adjusted to the PB the GI problems cleared up.   I’m sorry you are having allergic reactions.  It  be is the oldest, and simplest, of the MG meds.   Best of luck to you.

  • Cyndi DeHoff

    Member
    March 4, 2023 at 12:28 pm

    I kind of had the same problem with this drug except I was itching all over when I took pyridostigmine. My neuro suggested that it was an additive of the medication that I was reacting to and not a true allergy to the main ingredient.  He suggested I search for another pharmacy that uses a different manufacturer of pyridostigmine. So I was using  Walgreens and I found that Rite aid used a different manufacturer for their pyridostigmine which ended up solving the problem. No itching.  It was a huge relief because the drug works really well for me. I hope this helps. Good luck

    • Jennifer Thompson

      Member
      March 6, 2023 at 8:51 am

      What manufacturer did you switch to? I wonder how many there are…

  • Robert Powers

    Member
    March 6, 2023 at 8:49 am

    I guess I have been fortunate.  My excellent Dr’s have treated my MG very aggressively…Prescribing Pyridostigmine 240 MG, azthroziaprine and IVIG biweekly, then 3x every two weeks for over 6 years!  My symptoms were minimized except for muscle weakness (somewhat improved) minor ocular symptoms.  NO apparent adverse side effects.  I was prescribed prednizone for another issue but that turned into a nightmare, but did solve the vesicular inflamation…but my blood sugar skyrocketed…whereas I never had sugar issues before!  Eliminating prednizone reduced blood sugar to near normal.

    Now I continue the pills but have replaced IVIG with new drug Ultomiris infusions only once every 6 weeks…just started so time will tell…

  • Norman Ross

    Member
    March 6, 2023 at 8:49 am

    So sorry to hear of your negative reaction to Pyridostigmine.  I have had gMG for over six years.  For the first four years I was taking 60mg Pyridostigmine @  3 to 4 per day.  The nighttime leg cramps were horrible.  I modified my medication to 2 Pyridostigmine per day (morning and noon), and 500mg Mycophenolate @  1 per day (5:00pm).  The leg cramps disappeared.  Why?  When I am resting or sleeping and there is too much Pyridostigmine in my system, that enables too much acetylcholine to penetrate muscle receptors and cause certain muscles to contract involuntarily.  This bypasses the intricate brain, nerve, acetylcholine balance so the muscles get a flood of messages to contract, but do not get corresponding messages to relax.  Bummer!!  I buy these meds via goodrx.com for the best prices.  I hope that this info is helpful.

  • Dev keshav

    Member
    March 8, 2023 at 9:43 am

    I‘m so sorry that pyridostigmine has this effect on you. I had difficulties in the beginning with cramps, diarrhoea and often feeling like I was overdosed. But with time I learnt to adjust my dosage and timings . I also began taking azathioprine, when my MG became really bad. It was like I was in a semi crisis all the time . Very frightening. But now I manage. Hope your neurologist can figure out a better treatment plan. Wishing you all the best

  • Jonathan A

    Member
    March 9, 2023 at 1:31 pm

    This is a big question for me.  Since I was diagnosed, I continue to take the same dosage of 3 x 60 MGs  = 180MGs daily of MESTINON and   2 of 500 MGs twice a day = 2000 MGs daily of CELLCEPT.

    My symptoms started  7-25-2019 and after 8 months of CLUELESS DOCTORS not diagnosing me, I was finally diagnosed  on 3-25-2020, by a third floor nurse, who recognized all of my MG SYMPTOMS and talked a hospital doctor into giving me a NEURO-CONSULT and three antibodies tests…..  I was so SERO-POSITIVE that they repeated the three tests  … to confirm they were accurate.

    I have been in MG REMISSION since I left the fifth hospital on BLACK FRIDAY  11-27-2020.   People talk of bad side effects  …. but what is KEEPING ME SAFE … and what is KEEPING ME ill with still horrid onset insomnia and  not getting 100% hearing back after TOTAL SPEECH and HEARING LOSS for 4 months due to sedative and antibiotic OTTOTOXICITY ???  SO I take my pills RELIGIOUSLY  … to STAY SAFE.     So what am I doing right ????  I have had only my original 5 days of 5 hours of IVIG, upon my diagnosis  FINALLY   … so why am I in better shape that most everyone  … in the FOUR MG SUPPORT GROUPS that I ZOOM with?

    Does 2000 MGs of CELLCEPT keep me safe?    My new Endocrine doctor killed my STEROID PREDNISONE, that with STATINS, that another doctor dumped in me  … gave me weight gain, INSOMNIA and MEDICALLY INDUCED DIABETES II.   That great doctor also tapered and stopped all the LANTUS PRODUCTS that the hospitals were shooting me up with … so my prick scores are 70 to 113  … with A1C of 6.1  … so he killed that too, and I am only on 1Mg of Glimipride a daily.   So are my drugs different than your drugs  … so I only have INSOMNIA and some hearing issues  …   after 4 months of 100 % hearing loss in first 3 hospitals due to a combo of sedatives and TOBRAMYCIN  ???      So I am safe … but why?   I have a TERRIFIC old school MG NEUROLOGIST, who is keeping me safe  … but all my other doctors I have to constantly educate them about MG  … and why my blood tests are constantly irregular/anemic …  due to my IMMUNO-SUPPRESSANT THERAPY meds.

  • Carrie McDade

    Member
    March 9, 2023 at 2:52 pm

    I have had burning mouth syndrome for a year. The roof of my mouth feels like I burned it with hot cheese from a pizza. (My dental hygienist exclaimed how burnt my palate looked).  I also have a chronically coated tongue, and wake up with a severely dry mouth every morning.

    I take a very small amount of Pyridostigmine, 0-1 tab in the late afternoon depending on how weak I feel. The burning mouth symptoms don’t seem to be related to the Pyridostigmine.

  • Jennifer Thompson

    Member
    March 11, 2023 at 2:13 pm

    Thank you for all of the responses! I am taking 1/4 tablet at a time… seasonal allergies can confuse what’s going on but I think it’s going ok.

    I went from no medications to IVIG and they are trying to get vyvgart approved and now my neuro told me he really thinks Cellcept would help toward remission. I was trying to avoid Cellcept or Imuran.  And I haven’t decided I will take it. But I don’t know I have a choice much.

    I know everyone here knows how I feel. It is very humbling to experience MG but I will say there are blessings in the curse.

     

  • Mark Cox

    Member
    March 15, 2023 at 5:52 pm

    I’m 62 years old and on 240 mg Pyridostigmine combined with 200 mg of azthroziaprine along with Vyvgart infusions. Seems like high doses compared to the other replies. But in short I have had no side effects for over a year now. But…I have changed eye glass prescriptions 4 times in less than a year getting progressively worse in both eyes for distance but don’t need my reading glasses after 15 years of use. My Neurologist and optometrist are still trying to figure that one out. If it’s an allergic reactions related to any meds above, I’ll pass it on in a later review and appreciate reading everyone else’s responses.

    • Ari Maayan

      Member
      March 29, 2023 at 3:58 pm

      Mark, you and I are on the exact same drugs and dosages. You’re the only one I found that matches my therapeutic regimen exactly. I only wear reading glasses, because sometime back, I had cataract surgery and improved my vision and down to the point where I only need reading glasses. I periodically have mild blurred vision, and double vision. But it’s not anything to write home about. As I get close to the end of the day, one of my eyes, usually the left one begins to drag on till it’s almost completely closed by mid evening. Here’s the other strange thing. When I’m asleep my right eye stays at least partially open, so that when I wake up in the morning, I have a terrible burning pain in my right eye because it’s been mostly open most of the night. All the best to you.

      • Laurie Eason

        Member
        October 11, 2023 at 9:17 pm

        In reference to your “dry” eye in the morning – I use a CPAP and sometimes in my sleep the air would escape and make my already dry eye condition worse. I sew a lot and aade a simple night time eye mask out of soft fleece so that air does not reach my eyes. It has helped me a lot. I believe you can buy eye masks for night use. A simple fix if it works!

    • TheresaG

      Member
      October 11, 2023 at 2:35 pm

      How long on vyvgart? Assume it was last Med added?

      I’m in vyvgart for 18 mos. 7 mg prednisone and 240-300 mg pyridostigmine.

      In my first 6 months on vyvgart, I too changed eyeglasses several times. My vision has progressively gotten worse, then better, seems to be related to where I am in my cycles.

  • Carrie McDade

    Member
    October 11, 2023 at 2:52 pm

    I take pyridostigmine 60 mg twice a day and developed symptoms like yours in Jan. 2022 – coated tongue, extremely dry mouth upon awakening in the morning, and burned sensation on the roof of my mouth as if burned by hot cheese on a pizza. Symptoms were corroborated independently by my doc who noted that my tongue was coated, and later by my dental hygienist who gasped and asked how did I burn the roof of my mouth.

    I started anti fungal treatment thinking it was thrush, but 6 months of nystatin and Fluconazole did not help. Immune blood tests were done (negative) and I was referred to an ENT, whose exam was inconclusive. He suggested I stop brushing my tongue and eat more fiber-rich fruits and vegetables for possible nutritional imbalance. (I was on a medically-supervised weight loss program at the time).

    I was diagnosed with MG in Oct. 2020, and started Prednisone and Pyridostigmine at that time, weaning slowly off the Prednisone and discontinuing it by Jan. 2022. I haven’t noticed any correlation between taking the Pyridostigmine and the burning mouth symptoms. I’ve experimented with stopping the Pyridostigmine, but my lip and tongue muscles are too weak to negotiate a tidy dinner and my fingers cannot grasp a fork, so I continue it.

    The burned mouth symptoms never have gone away, but they do wax and wane, and I have just learned to live with it for almost 2 years, and self-diagnosed burned mouth syndrome. I believe I read somewhere that burned mouth syndrome just goes away on its own, sometimes after 6-7 years!

    Carrie

  • Lou DeYenno

    Member
    October 11, 2023 at 4:19 pm

    I was diagnosed 3.5 yrs ago and started on a regiment of IvIG 2x months, prednisone (various amounts), Mestinone 120-180 daily and Cellcept (500-1000). I am now on Ultomiris every 8 weeks, prednisone(down to 15mg) and Mestinone (180 slow acting 1-2x)! I’ve had 1 crisis (10 days in ICU, intubated 3 days) 5/30/22 and a flare that lasted from 3/21/23 till now (2 different hospital status but no intubation)Still not 100% but I’ll take it. Ultomiris seems to be doing its job…I’m slowly decreasing the prednisone, hopefully to zero? And the Mestinone is trial and error on daily amounts…I get a dry mouth and throat at times or I can’t stop salivating and intermittent hand cramping and foot cramping The prednisone gives me purple blotches or elongated bruising on my calves and arms. I’ve tried Cellcept but that was ineffective, imuron gave me a high fever and the IvIG stopped working! My body is getting accustomed to the current regiment and my energy level is up and I have started to exercise again ( sit-ups, weight training and bicycling) without getting tired…. Praying for continued and lasting relief. btw I’m 74 and in good health except for the MG…prayers for you and all others with any disease !

    • Pup

      Member
      October 14, 2023 at 8:28 pm

      Lou, best wishes with you current regiment.

      Shout out to our caregivers as well. From all the varied responses regarding effective meds it is no wonder MG is called the “snowflake disease”.

      Bless us all and keep the faith.

      Please, please take part in any applicable research trials, they are the best hope we have for a cure and/or effective treatments.

      68y/o female

      10 years with ocular then generalized MG.

      Pup

  • Keith Wilson

    Member
    October 11, 2023 at 6:21 pm

    Never had any side effects from pyridgostimine. But it will upset your stomach. If you don’t take it with food. I have also found I do not get an upset stomach if I take the meds with V-8.

  • Dev keshav

    Member
    October 14, 2023 at 9:09 pm

    In March this year, I wrote about how I was managing with pyridostigmine, by adjusting my dosages.but, it got to the stage where the side effects were no longer tolerable. I have now stopped taking it, and trying to see if I can get by with taking only azathioprine. So far, I feel better without the side effects, but at the same time tired all the time. We’re all different and have different situations with the type of neurologists we have. N my situation, I have to take care of myself. So far in the last 4 years, I have been through flares , but have not been hospitalised. It’s just a day at a time. Wishing all health which is manageable.

  • Bli shame

    Member
    October 19, 2023 at 2:12 am

    I take as much as420 mg of Mestinon depending on my symptoms including fatigue

    I find very useful .in addition I take VYVGART every 2 weeks

    and prednisone 14 mg which I am trying to taper. Mestinon can and will

    Cause diarrhea and flatus which can be controlled with Immodium.

    VYVGART is my lifesaver.

    B.Shameqqq




  • Ken Spencer

    Member
    October 20, 2023 at 1:13 pm

    I take 30mg a day and have no issues whatsoever

  • W Courtland Robinson

    Member
    October 20, 2023 at 2:11 pm

    I am a 68-year-old male, diagnosed with MG in 2014. Had a thymectomy and have been on pyridostigmine since then (60mg X 4-5 times daily). No burning mouth side-effects (sorry to hear that) but get occasional GI issues if I take two pills too close together. Overall, managing fairly well and I hope others out there are as well!

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