Hi:
I am more of a lurker, than an actual poster. I read the boards every day and add responses when I feel I can offer some help, but not much else.
I have had a very bumpy road with lupus since my dx, however, thing seem to be going badly for me right now.
I have "mild" kidney involvement and am on cell cept (2000mg a day), plaquenil, ultracet, percoset(only for breakthrough pain), baby asprin (for APS), Fossomax and Cymbalta.
For a while things were good, now my kidneys are leaking protien (+3) with high RBC's. My esr shot from 4 to 29 (which is high for me) and my CPK's went from 120 to 2650, my C3 & C4 are down as well. Some of my other numbers are off too (not sure what they are as I think I zone out after I heard some of this).
My ANA and anti-DNA and all other Lupus indicators are normal - I am considered a serum negative Lupus/RA sufferer.
I am scared that my kidney's are getting worse and I don't know what will come next. I see my Rhumy in February and will have testing every 4 weeks until then (a 24hr urine showed protien and RBC's on the low end of High...if that makes sense).
Can any one out there with a similar situation offer me some insight? I am just wondering if I need to be worried? My rhumy has always been very proactive in his treatement of me, he is open, listens to me and never poh-poh's my complaints.
Should I push the Rhumy to do something more?
Should I take the bull by the horns and take myself to a nephrologist? or should I wait for the Rhumy to refer me?
Any advice would be appreciated.
Thanks for your assistance in advance
Stephanie
I am more of a lurker, than an actual poster. I read the boards every day and add responses when I feel I can offer some help, but not much else.
I have had a very bumpy road with lupus since my dx, however, thing seem to be going badly for me right now.
I have "mild" kidney involvement and am on cell cept (2000mg a day), plaquenil, ultracet, percoset(only for breakthrough pain), baby asprin (for APS), Fossomax and Cymbalta.
For a while things were good, now my kidneys are leaking protien (+3) with high RBC's. My esr shot from 4 to 29 (which is high for me) and my CPK's went from 120 to 2650, my C3 & C4 are down as well. Some of my other numbers are off too (not sure what they are as I think I zone out after I heard some of this).
My ANA and anti-DNA and all other Lupus indicators are normal - I am considered a serum negative Lupus/RA sufferer.
I am scared that my kidney's are getting worse and I don't know what will come next. I see my Rhumy in February and will have testing every 4 weeks until then (a 24hr urine showed protien and RBC's on the low end of High...if that makes sense).
Can any one out there with a similar situation offer me some insight? I am just wondering if I need to be worried? My rhumy has always been very proactive in his treatement of me, he is open, listens to me and never poh-poh's my complaints.
Should I push the Rhumy to do something more?
Should I take the bull by the horns and take myself to a nephrologist? or should I wait for the Rhumy to refer me?
Any advice would be appreciated.
Thanks for your assistance in advance
Stephanie