My doctor put me on Pyridostigmine as treatment for myasthenia gravis. I was told of the side effects, like upset stomach, but after 4 days and 4 pills, I had severe shortness of breath, something that I’ve never had before. I quit taking the pills, and it has been 10 days now. When I try to take a deep breath, it feels like my lungs are burning. It is getting better, but I’m still suffering shortness of breath. Has anyone else been affected in this manner by this drug?
I’d say you’re on that list. Were you not told about those particular side effects, and the fact that they’re serious? You should have received a pamphlet of comprehensive info when you picked up your prescription. Are these not on there?
You ought to call your doc’s office ASAP.
MG patient here. I’ve been seen by nine neurologists, attended conferences in the UK and in America, and know many MG patients–some in real life, some from MG message boards. I have been on Mestinon (pyridostigmine) for 24 years. How much depends on how I am feeling but generally 60mg every four waking hours and half of the 180mg sustained release (pyridostigmine bromide SR) at bedtime.
I am not a doctor.
The diaphragm can be affected by MG just like other muscles. Shortness of breath is a common symptom which can be lessened by taking the proper dose of Mestinon. Too much can make symptoms worse and side effects are generally correlated with the amount one takes. A neurologist can help a new patient achieve the best balance between symptom alleviation and side effects. The initially prescribed dosage is only a starting point. If one cannot tolerate Mestinon, or if the condition’s severity calls for it (it often does), other treatments are available.
“Has anyone else been affected in this manner by this drug?” The burning when you take a deep breath? I have never heard of burning. I might hear terms such as heaviness, aching, weakness, or being starved for air when an MGer is complaining about breathing. But those terms would suggest further, not less, treatment would be helpful.
As Machine Elf suggested, please see your doctor as soon as possible. Ventilators are nasty.