Diagnosed in 6/24. Myasthenia Gravis
Neurologist started me on pyridostigmine bromide 60mg. Twice a day. They r helping me but on 30%. I can only chew food properly for 3-4 bites and then I have to wait & then try. Meal times r becoming long and hard and eating cold food . I need to know if there r other medications which r more effective? Do u recover from it or is this my future. I had to c a neurologist privately as nhs is a year wait. My eyes were affected first and fatigue levels I had never experienced before. Both my eyes were almost closed especially left one & I lost vision in it. Eyes were blurred,double vision and cross eyed and very dizzy for almost 13 weeks . Chewing food was impossible and swallowing was difficult to.lost 8kg in weight in a matter of 10 weeks. Hospital stay predicted a tia and doctors were not doing anything else. My desperation and weakness lead me to c a neurologist and he said I looked very depressed and had to wait for blood test to prove I was Myasthenia Gravis positive and now seeing him in 2 months. GP is trying to get me a neurologist appointment on nhs. What a nightmare I have had. I wish everyone out there suffering with MG all the best & a positive outcome. Take Care everyone.lots of positive vibes 🤲🏼🙏🏽🧡
Good evening thank u so much for sharing your experience with various medications for MG. I am now seeing a neurologist who has started me on Prednisone and 1 tablet a week of Alendronic acid 70 mg tablets and vitamin D with calcium. I am feeling the benefit at last . I saw the neurologist 3 weeks ago. I am suffering side effects too. Cramps in the stomach and legs and hands and feel hot and sweaty.had a headache for a few days also unable to sleep properly too. Fatigue is still there when I do any cooking and cleaning. Life has changed drastically and it doesn’t help that I am 72 & don’t have any other support from family. Husband is 80 and I have been his carer for years!!! I am being optimistic as I am seeing a physiotherapist and a EMG test & a chest X-ray. Soon. Leaving on a positive note that all this helps me control my symptoms and can have a better life soon. Wishing everyone all the best. Take Care. 🙏🏽
I'm really sorry to hear that you're going through all of this. It sounds like you're experiencing a lot of physical and emotional strain. It's important to take care of yourself, especially when caring for someone else. Have you considered reaching out to local support groups or community organizations for assistance? I think you may benefit from the tips in the following articles:
https://myasthenia-gravis.com/medication-side-effects, https://myasthenia-gravis.com/clinical/prednisone-long-term-side-effects, https://myasthenia-gravis.com/living/mestinon-side-effects-relief, https://myasthenia-gravis.com/living/cleaning-aids, https://myasthenia-gravis.com/living/kitchen-products, https://myasthenia-gravis.com/living/cooking-techniques, https://myasthenia-gravis.com/living/meat-solutions, https://myasthenia-gravis.com/living/convenience-vegetables-cooking, https://myasthenia-gravis.com/living/frustratedJodi, Team Member
When I first started on Mestinon, I was taking 120 mg every four hours except while I slept. I’m now down to 90 mg every four hours again except when I sleep. I think you’re on adults that is way too low for your condition. luckily my neurologist has allowed me to manipulate my doses to what works best for me. I did go for a good number of months maybe even half a year or more I had no Mestinon. I find that it helps not only keep my double vision and drooping eyelids away, but it also helps with slurring speech and fatigue. again if I took your dose, I don’t think it would help me at all. I hope you’re able to find a neurologist that is very knowledgeable in MG and is able to help with this healing energy.
Love and Light
FrankThanks, Frank, for the info!
, if you are indeed curious about talking to your doctor about increasing your pyridostigmine dose, know that the usual adult dose for Myasthenia gravis is: "Immediate-release tablets and syrup: 60 to 1500 mg daily (average 600 mg/day divided into 5 or 6 doses) spaced to provide maximum relief
OR
Sustained-release: 180 to 540 mg once or twice daily (separated by at least 6 hours); it may be necessary to use the immediate-release tablets or oral solution in conjunction with the sustained-release tablets for optimum control" https://www.drugs.com/dosage/pyridostigmine.html.
There are many other treatment options for MG. Pyridostigmine is a first line of defense, and many continue with its use after starting other treatments like IVIG, immunosuppressants, or biologics: https://myasthenia-gravis.com/treatment.
Jodi, Team Member
Hey there! Sending you so much compassion for everything you're going through with MG. Are you currently only taking pyridostigmine? There are many other treatment options for MG that you might want to consider: https://myasthenia-gravis.com/treatment. Many people with MG use a combination of treatments to manage their symptoms, and they can gradually reduce them under medical supervision once their symptoms are under control for a while.
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Do you know which MG antibody you have or if you are seronegative? https://myasthenia-gravis.com/blood-tests.Jodi, Team Member
