Is mestinon not available anymore?
I have been taking mestinon for ocular MG since about 2012. I’ve been told that it’s been stopped being made and I can’t get anymore. I’m waiting to be reviewed again urgently. Does anyone know if it’s been stopped?
I mainly have always just had ptosis and eyelid weakness but I’ve slowly started to get weakness of my mouth and occasionally nasal speech. If I’m stressed or anxious it makes it worse too. Are there other medications now other than steroids too? I’ve not been reviewed for a long time and I’m feeling worried now but I am being seen this seen this week. Thanks.
Hey! I do not see any news of pyridostigmine (mestinon) being discontinued. However, it could be that there are current restrictions on getting access to it in your country. Or problems with insurance approval. Suppose your doctor insists it is not being made anymore. In that case, I recommend seeing another MG specialist to avoid a dangerous reaction from being without the mestinon. Your generic or primary doctor may be able to prescribe it.
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Steroids are typically used when symptoms are critical and need a quick fix. This "fix" is only temporary, as a steroid should not be used long-term to avoid the risk of severe side effects. Immunosuppressants are the typical route for those with MG. However, they typically take a few months to take effect, so steroids are often used first until the immunosuppressant control the symptoms, https://myasthenia-gravis.com/treatment.
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Do you know if you test positive for the MG antibodies Acetylcholine receptor (AChR), (2) Muscle-specific tyrosine kinase (MuSK), (3) Low-density lipoprotein receptor-related protein 4 (LRP4), or are seronegative? Immunosuppressants typically work best for certain types of MG (based on feedback from those in the MG forum communities, keep in mind everyone with MG is unique and responds to treatment differently):
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Seronegative- Plasma exchange (PLEX), IVIG, Rituximab, Azathioprine (brand names Azasan®, Imuran®), and CellCept
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AChR positive- Eculizumab (brand name Soliris®), Azathioprine (brand names Azasan®, Imuran®), Mycophenolate mofetil (brand name Cellcept®), Vyvgart™ (efgartigimod)
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MuSK positive- Rituximab- Jodi, Team Member
