Thank you all for your hugs and interest. We are definitely all in this together.

CynthiaRye, So sorry you have been going through all this! I didn’t know that low sodium levels can happen with IVIG. I know everyone responds differently to treatments. My Orthostatic Hypotension has been worse since doing regular intervals of IVIG infusions so you gave me some food for thought 💭 I wonder if my sodium levels are low? I do hope your symptoms are starting to subside & that you are able to eat safely. Not being able to swallow is a scary MG symptom.

Unfortunately just about everything than can be used to treat the muscle weakness of MG has side effects such as increased muscle weakness or other side effects that are almost worse than the symptoms of MG , however the rule that anyone considering treatment which will only relieve the symptoms at best not cure the disease is risk vs benefit. If the symptoms are life threatening such as inability to swallow or breath then the risk of the treatment must be weighed in consideration of whether to try the treatment and also treat the side effects if possible. For example I had critically low sodium as a side effect of IVIG treatments. Recently I was hospitalized because of severe malnutrition due to difficulty with swallowing. My doctor gave three IVIG treatments and inserted a feeding tube for a few days. My sodium which does tend to run low now at all times was checked daily. Now I supplement my diet with plant based protein drinks, keep easy sources of nutrition with little cooking required and keep an electrolyte drink handy called Liquid IV. I hope this helps other people with MG considering any treatment option to understand that how motivated you remain and how your doctor explains the necessity of short term discomfort vs longer periods of symptom relief and increased tolerance of the drugs with conservative use and proper management of undesired side effects of treatment. I hope this is helpful.

I had three Vyvgart Injections at an infusion center. I went to my dentist and got my teeth cleaned but took my antibiotic before the appointment but within a few hours symptoms of a sore throat appeared and were worsening rapidly. I went an ER they ruled out strep throat, Covid and any other infection. After about 24 hrs I developed pneumonia. Community Acquired Pneumonia. I don’t know if the Vyvgart lowered my resistance to upper respiratory infection but it is a known side effect. I have never had pneumonia before so I discontinued the injections.