bad test results...
Hi everyone, been awhile since I've been on here but I really need to talk to people who understand how frustrating things can be with this disease. For the last year or so I've been slowly cutting down on Cellcept, I started at 2500mg/day and am now down to 1000mg/day. My doctor agreed to let me start tapering because my husband and I are thinking about having a baby sooner rather than later and everything has seemed to be going smoothly - I even saw a high-risk ob for a pre-pregnancy consultation a couple weeks ago.
Unfortunately that was my first hint that something was wrong. The high-risk ob visit was great and the doctor seemed happy with all my test results (last one done in Dec 09), the only thing was my bp kept reading really high but they didn't seem too concerned about it since it's normal for people to get higher readings at the doctors office and I fibbed and said my bp has been really good lately even though I honestly haven't checked it much in the last two months since everything has been so good...
I got home and started diligently checking my bp and of course it's been high since then. I already had an appt to see my doctor tomorrow so yesterday I went to get my normal tests done and I just got the result of the urinalysis and it's bad.
I'm so frustrated and my husband is very understanding but I think he also just doesn't get how awful this makes me feel. I had 10-25 red blood cells when normally i only have 0-2. My total creatinine was 112 when it was only 50 in Oct 09 and my total urine protein was 255 when it is normally around 30-50. My doctor has expressed concerns about me tapering off my meds because of the kidney involvement and the fact that I have had flares on lower doses before so he tapered me very reluctantly. The high risk ob was optimistic about me having a healthy pregnancy but my rheumy has been supportive but not encouraging about it and I'm pretty sure these results are only going to make him even more cautious. I'm just really afraid that now that I seem to be having a flare he is never going to let me taper again =(
Arrggghhhh....just wanted to vent...I don't know what to do =(