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Originally Posted by J King
Thanks for the kind wishes. I was released from hospital today (six days after surgery) and can happily report that the surgery and recovery so far have been good. The surgeon had to remove some pericardium to safely remove the thymoma, but that hasn't complicated the recovery and there were no other significant issues. The days immediately after surgery were difficult, of course, but I gained in strength steadily and the nursing staff and surgical team at my hospital did a fantastic job and took great care of me.
I haven't had any MG flare-ups, the relatively minor symptoms are unchanged from immediately before surgery. My neurologist is adopting a wait-and-see approach so I can regain strength (we had discussed starting on prednisone but I'm sticking with just mestinon for now).
So now I'm home, moving around although some things are still awkward or impossible. All in all as good as good have been hoped at this point - I'll keep my fingers crossed and obey the doctor's orders!
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I am an infusion nurse and I have treated 3 folks with MG. They all get immune globulin intravenously. I have given over 100,000 Grams of IVIG so I do fancy myself a bit of an expert on the drug. Before I go any further let me say that I H.A.T.E. prednisone. Doctors like to prescribe it because it is and has been a great workhorse med. Also, Doctors are scared of IVIG (Immune Gobulin) because of the side effects. The reason patients have side effects is that nurses give it too fast. It is not unlike a blood transfusion. But, that is the drug of choice to control MG for the long haul. The loading dose should be 5 days in a row and then monthly with "tweaking". The spread for IVIG is 200mg/kg to 2000mg/kg so you see there is a lot to work with. The standard fare is 400mg/kg. The key to giving IVIG is to dose it to effect. You don't want a sea/saw effect. You can dial it up or down and by dose and frequency. I give my patients IVIG @ 10GM/hour after they have shown a tolerance. Gosh I'm wordy. If you have any specific questions I will be more than happy to assist!