slurring of speech
My husband was getting infusions and all of a sudden they switched him to a different med and in a few days he was slurring and then having problems swallowing he went to hospital for nine days . they did some kind of plasma thing where they were washing out his blood and putting it back in .. it worked for five days now today he is slurring again .they have him on 20 mg of prednisone until they get an ok from insurance for a new infusion hoping he wont develope swallowing issues again and end up back in the hospital
The only thing that got me out of a crisis was plasmapheresis.I am given 6 500 ml bottles of Albumin 5 percent human Through an IV.It takes about 3 hours or so. after a crisis I was given 5 treatments every other day. I have been on weekly and some times every other week treatment. I used to get IVIG for about a year thenn it quit working and made me sicker. The doctor stopped it.Mestinon made me worse so did Cell Cept. I am currently signed up to get the CAR T CELL therapy that stops this disease. I have to wait 6 weeks after I give blood because it takes that long to make the new T CELLS .Then I go for weekly infusions for 6 weeks of the new T CELLS. After that I should be good.
Slurring is why I was originally diagnosed with MG. If you dont want to slur don't talk. If you continue talking while slurring, it exacebates the condition and leads to innability to swallow, sometimes for a couple of days. Drinking is also amazingly hard, due to the danger of it going in the wrong part of throat. My usual medication (Australia) was Mestinon 120 mg up to 4 times a day (kicks in, in 30 minutes lasts about 3-4 hours). I was put on monthly IVIG infusions (didn't really help me much, although in the beggining there were measurable improvements). Unfortunately later took a turn for the worse, blah, blah, crisis, diagnosed refractive MG, over 18 months, got emergency speacilist care, was put on "Cyclosporene"(over 6 month) went into remission, about 20 months still OK. You do relapse with time (but during study someone lasted over 5 years). Have no symptoms of MG for over 20 months. You do have to stop breathing a couple of times before they fastrack you to this procedure. As there could be serious side effects.
I’m sorry you and are your husband are going through such an uncertain and scary time. I hope he’s able to start his new infusion and avoid having to be back in the hospital. Please let us know how he’s doing. I’ll be keeping you both close in thought. -Julie (team member)
