A week ago she had been in hospital for a week already with the kidney failure and Lupus Nephritis diagnosis. For the first week Bev was taking so many pills each day – 28! - that her mouth and gums went blue and she developed ulcers in her mouth and blisters under her tongue. They had requested the special injections ($7,000 each) from Tasmania that the specialist said they should try but were having no luck getting authorisation to use it.
In the middle of the week after the injection drips arrived the specialist said just go ahead because she needs it.
It turns out to be - Rituximab - you can Google it or there is some info on this page ncbi.nlm.nih.gov/pmc/articl... but it is pretty out-there stuff – real sci-fi! The sort of drug they give to Chemo and AIDS patients.
It involves a 6 hour drip – and by the next morning Bev was recovering – more strength – things starting to function – and today the mouth ulcers and blisters are almost gone and she is down to 8 tablets a day and blood pressure returning to normal – better appetite and functionality all round. Still exhausted.
Now they wait and test to see what happens and she is due for the other drip injection in 2 weeks.
Don’t want to promise miracles but there is a slim possibility that hitting Bev’s system with Rituximab may positively impact her overall condition eg all her other many conditions. As you see from the info on the link... they use it for a lot of extreme conditions and the use with autoimmune conditions is only just starting – so as usual with all the things she tries - Bev feels like she is playing guinea pig.
While I was there the nurse removed the Cannula (needle in arm for drip) and then went away and left Bev to put her finger on it for a while to stop the bleeding while we were talking – but that was a bit silly because with Bev’s bent arthritic fingers it must have slipped off and she was bleeding into her lap without realising!! Crazy stuff. So the nurse finally came and there was blood everywhere (not enough to worry – but still) and they had to change the sheets. Doh. Love hospitals.
Bev sees these posts and is grateful for all your wishes.
Will advise any news.