I'm sorry to hear that you're in such bad shape. It's really a shame that your pain is so bad and your pain meds don't help much. Sounds like your doctor is trying the best that he can. I get the feeling that you really like him. I know of a couple of members here who are taking arava to treat their lupus, maybe you could suggest it to him. I didn't see if you've taken Rituxan either that's an option.
Nona, I want to say to you don't give up. I like yourself have tried everything except for arava. I'm currently on Remicade for my RA, and so far it doesn't seem to be working at all. I like you have terrible pain and I'm on some pretty heavy duty drugs. When I can't control my pain with oral meds my doctors admit me to the hospital and give them to me IV. I've struggled with lupus for 23 yrs now and I can say I had some good years with remission, the past 8 years have been going down hill. I like you have been on everything. I was on Cytoxan for 1 year and I was very unlucky it helped my lupus I felt better that way, but I developed blood cancer - MDS. MDS is known as "smoldering leukemia" and it will move into being full blown leukemia at some point.
My lupus is out of control, my RA is flaring up and my Fibro is always hurting me. Then on top of it I've got blood cancer, there are days I feel totally like why am I trying to stay alive, why do I allow myself to continue to suffer. I don't have an answer really, except I have a child and I need to be there for her know matter what. So I dig deep into my soul and say I'm gonna get through this, my doctors will eventually find something that works for me. Even though like you I'm immuno suppressed I still keep having organ issues, and honestly my doctors have said we don't know what to do for you, they keep trying to make me comfortable. Nona don't give up keep fighting, we'll all be here for you and if you have specific questions you can email me. You're in my thoughts and prayers. Keep fighting and keep hanging on.
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.