yes, it is concerning, as she seemed so lonely, and with so much to deal with.

I have also done some more researching on Rituximab in MG. and found out that at least some neuros are concerned about giving it to patients with severe respiratory symptoms, who require respiratory support. probably becaue of its acute side effects of rigors, and sometimes transient drops in O2 sats, and also rare instances of respiratory symptoms following its administration that may be more significant in patients with significant resp. problems to begin with. ( I wasn't given the exact reason for their concerns, so I am basically speculating here).

and also as I understood they are much more cautious, as it is still considered an experimental treatment for MG.

I have also heard first hand from a patient currently recieving it (on another MG support group), that she had severe weakness for a few days after the infussion, and some shortness of breath that she did not have before.

on the other hand it seems that there are quite a few patients that were refractory to other treatments and went into remission with rituxan. my neuro has one such patient, which he said had an amazing response after 5 years of being refractory to almost everything that she got, but, the data is still sporadic and sparse.

so if her condition becomes signifcantly worse, it may become muchy more of a problem for her to get it, and it does seem to be her only hope for a better future, as she is already maxed on plasmapharesis as I understood from her posts.

so hopefully she did manage to find some solutions eventually. I know that there are times, when it seems that you have no options left, and then something comes up unexpectedly that really helps.

alice