I have to say that I've been feeling pretty well lately. The plaquenil seems to have really helped me. I do have one question for those with kidney involvement. Outside of bloodwork and urine tests, did (or do) you have any physical symptoms stemming from your kidneys not working well? I'm guessing fluid retention would be one result, right? I'd love to hear from anyone with any information on this. Thanks!~
I was just coming on the boards to post a few questions of my own about kidney involvement. I will tell you what my problems are and then I am going to post a question about what I was told today. My problems are increased protein in my urine found through urinalysis and 24 urine test, increased blood pressure and water retention. Good luck to you. Bern
The only thing that I can associate for sure with the kidney involvement is fluid retention. I had noticed for several years now that my feet and ankles seemed swollen. Nothing extreme or ballon-like, but there is this puffy pouchlike area around both my ankles that should not be there and never completely goes away. It has gotten so that I hate to try on cute shoes anymore because they all seem to make this awful hunk of swollen flesh on the top of my foot. Or if they are strappy sandals, the flesh between the straps will be swollen and puffed out. Though, I have gained weight, over 30 pounds since I have been on prednisone, so that could also be a contributing factor. The fluid retention is very likely to make you have higher blood pressure, which potentially causes more damage to your kidneys, and the cycle of damage just goes on and on unless it is controlled with medication or the lupus nephritis is put into remission.
Thank you for the responses! If you wouldn't mind sharing them, what were your C3, C4, and total complement (CH50) levels when you had kidney involvement? I'm trying to see if what my rheumatologist is saying is reality for people with kidney involvement.
dont remember the compliment numbers, but they were extremely low.
my antidsdna antibodies were greater than 1000. that, with low compliments, is a good indicator for disease progression in lupus nephritis.