Starting Imaavy---anyone one it?
I am a 74 yr old male with MG. Prednisone (high dosages) elimate most MG symptoms (especially eyes), but of course is slowly killing me probably! We tried Rystiggo and it lengthened the time between eye issues. We then tried IVIG (twice) and it gave me severe headaches and made me feel lethargic both times. Now we are going to try IMAAVY. anyone had any experience with it yet?
yes had CT scan and all looked good. Very active here too--luckily! When not dealing with side effects of meds I fish 3 to 4 days a week. MG causes double vision about every 2 months and I have some "tiredness" associated with it sometimes. I dont get the typical muscle weakness but just whole body tiredness when doing any strenuous yard work or such. I then work 15-20 minutes and rest 10 then repeat.
Have you had a ct scan to see if you have a thymoma growing on your thymus gland. At our age chances are that you have an abnormal thymus gland. I had a thymectomy in 2021 which removed a cancerous tumor and that was followed by five weeks of radio therapy. I have been in remission now for over five years with no obvious symptoms i stopped taking prednisone about four years ago because of the side affects namely swollen lower limbs. I still take mestinon and mycophenolate but am very active and in the gym four days a week. A thymectomy for people of our age can be very successful. Best of luck
