Myasthenia

Hi there I was diagnosed with mg in early 2020. In April 2021 I had a thymectomy to take out my thymus gland and a thymoma which turned out to be a suspicious mass. That was followed by five weeks of radiotherapy and I have a ct scan every six months and have been free of any symptoms for nearly four years. I take mestinon 60mg four times a day and mycophenolate 750mg twice a day.the thymus gland produces self reactive antibodies which attack the neuro muscular junction so it is important to have a ct scan to see if you have an abnormal thymus gland. I am now 82 and recent reports that I have read suggest that at my age removal of the thymus gland shows a significant improvement in the condition and a large percentage of people go into remission with no sign of any symptoms.

Are you by now seeing any benefit from the mestinon?

Mestinon is not just therapeutic, it is diagnostic. If your mother has ACHR positive MG, there should be immediate benefits. By immediate, I mean sometimes within a half hour of taking the first pill. If it has no effect, your mother needs to be tested for other MG sources, as Jodi has laid out.. Hopefully, the Mestinon is working for your mother by now, but Jodi is dead right. It's a band aid. It attacks, for just a few hours, the antibody that is already in your blood. It does nothing to address the production of the antibody.

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