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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?
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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
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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
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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.
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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.
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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
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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…
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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.
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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
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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.
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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.
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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.
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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.
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