Myasthenia
My 81 year old mom was recently diagnosed after being sick for almost 4 years. She has now been on medicine (mestinon) for 2 weeks.
Has anyone taking this medicine experienced things getting better quickly or did things worsen?
Any helpful information is greatly appreciated.
Hi there! Welcome to the community! I’m so sorry to hear about your mom's diagnosis and the challenges she’s faced. It's great that she has started on mestinon. Many people here have shared their experiences with it on our site. Here is an article I highly suggest about what to expect when starting mestinon: https://myasthenia-gravis.com/living/starting-mestinon-expectations.
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Think of mestinon as a band-aid. Most experience around 4 hours of improvement, but this varies with dosage. Keep in mind that not everyone will experience improvement with mestinon, and this can include side effects that are too intolerable to continue: https://myasthenia-gravis.com/forums/side-effects-from-pyridostigmine-mestinon & https://myasthenia-gravis.com/forums/mestinon-not-working. Mestinon is also a first-line MG treatment. Most people end up adding immunosuppressants, IVIG, or other treatments to control symptoms that are not fully controlled with mestinon: https://myasthenia-gravis.com/treatment. There is also a slow-release version of mestinon that can be prescribed for night use if your mom wakes up with aggravated MG symptoms.
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Do you know which antibody your mom's blood work tested positive for (1) Acetylcholine receptor (AChR), (2) Muscle-specific tyrosine kinase (MuSK), (3) Low-density lipoprotein receptor-related protein 4 (LRP4)
or if there were no MG antibodies present (seronegative MG)?
Jodi, Team Member
