Today Dianne had 3 appointments, one with Dr. Cagan (General), one with Dr. Manion (Bladder), and also Dr. Tran (Rhuemetology, Lupus). Dr. Cagan still believes that there is a lupus cerebritis issue going on. Dianne mentioned the Sjorgrens Syndrome to Dr. Cagan and he believes that is a side effect of one of the medications that she takes, so he cut that dosage in half to see if that helps the dry mouth.
Dianne has been receiving an electrical stimulated acupuncture through her bladder from Dr. Manion and this seems to be going well. She has had some different medications for her bladder as well, which has helped make her a lot more comfortable.
Dr. Tran spoke with Dr. West (The Lupus specialist at University Hospital) and also got a copy of his notes. She did explain that lupus cerebritis is a difficult thing to diagnose. Most patients are severely ill for awhile, in the hospital and don't respond to smaller doses of prednisone, as Dianne has done in the past. She also said that having the MAC infection makes diagnosing a lot harder, as it's hard to say what symptom is a result of the MAC and what is a result of the lupus. She did say that if Dianne had all of these same issues she's had over the past few months and no MAC infection, then she would say most likely it was lupus cerebritis. Dr. West wasn't even sure that this was a lupus cerebritis case. There have been some indications in blood tests that the lupus is flaring up, so again, the balance is trying to get rid of the MAC while controlling the lupus.
Dr. Tran is going to put Dianne back on Celcept, this is a medication she was on before going into the hospital in October. She is going to keep her on 10 mg of prednisone, so this is not the smallest dosage but not nearly the largest either. Dr. Tran is really hesitant to fully supress the immune system because Dianne will need it to fight the MAC along with the antibiotics. They are planning another MRI for May/June time frame and will see if any of the white areas change between now and then. This will also give 8 weeks of being on celcept to take some effect, if it's going to help improve the lupus and will also enable them to determine if the spots are due to lupus or something else. The next appointment with Dr. Tran will be April 14. There is a check up appointment with Dr. Gill (infectious disease) a few days before that, and Dr. Tran will be able to review results from that appointment as well as check in on the lupus medications that are changing.
We appreciate all the help with visiting Dianne and making meals, as well as offers to drive Dianne places. This has been a big help to us all.
