What are anyone’s experiences in changing over from older immunesupressants to the newer compliment inhibitors ( Solaris or ultimoris or ziucoplan ) or FcRn (vygart or rystiggo/rozanolixumab).
If this was done, how was it done ? I am in Australia where there is limited experience and availability of these. I have gMG with modulating antibodies. Also SLE and hypothyroidism. I saw the recent MGFA conference on u-tube where it was suggested the ideal combination of treatment is addressing both antibodies ( FcRn or other immunesupression or plasmaspharesis/IVIG ) and compliment inhibitors together, but I’m not sure they are doing this yet.
I take maximal doses of mycophenolate, rituximab, IVIG 4 weekly and Mestinon 180 mg every 3 h and require Mestinon more often in the last week of the IVIG cycle, or to exercise or work full time at times. I run a mostly 80% normal life, just severely immunosuppressed. I still get droopy eyes when reading/ watching Tv or driving or if I delay Mestinon, and leg greater than arm weakness and fatigue when I overdo it and don’t rest when I need to
I’m worried the newer drugs may be no better than what I’m already on, short of less overall immmunosuppressant and thus risk from this by utilizing more targetted therapies.