Posted 1/20/2019 6:42 PM (GMT -7)
Thanks again, I too think it’s well time we tried something else.
I did try plaquenil but had trouble with feeling “flat, or disconnected”, I just didn’t like the feeling at all.
I also tried MTX and it worked well for me but it continually raised my liver enzymes so I was told I had to come off it. I have been told of fatty liver disease and PBC because of steroid use so I guess that might have something to do with it.
I also tried IVIG but had a life threatening reaction, tpnobody really wanted to talk to me at length why but I suspect it was due to my IgA deficiency. There was a black box warning on the one used, which stated clearly about reactions with IgA deficiency.
Regardless nobody wanted to try a different IVIG suspension/brand as the reaction was life threatening.
I had never tried any of the chemo meds, but did do Ritixamab for the ITP (low platelets) and had no trouble with it and it worked very well so maybe I would be okay with them. Ritixamab so far is not available for Lupus, I was given it off label, paid for by the company as kind of a a study patient. It was very expensive otherwise. But it is used and covered for for rheumatoid arthritis.
I think my rheumy is very, very good, but I think she struggles with so much going on in one body, and with my difficulty with drugs.
We are going to have to though. Things have been getting worse over the last two years.
It’s the sjogren’s for sure, when the dryness gets very bad I know I am in for it.
I often feel on fire, then cold, head pain, dizziness, cognitive issues and speech problems, terrible digestive problems as a motility problem I have gets much worse. It is very hard to eat. Insomnia and night sweats, and then today while I was doing pretty good putting away my laundry something hit me like a ton of bricks and I HAD to go to bed. That was about 11:30 am and I slept like I was in a coma for the entire day....just crazy and no idea why.
So it has become neurological in my opinion. Health care here is difficult as hospitals and clinics are at critical with regard to wait times. Specialist appointments are not much better.
My hubby waited two years to see a neurologist....!
Thanks for your help, tuffymason