[sam101360]

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

 

[Clare.T]

Dear Stephanie

I am really sorry to hear of this latest development :hug::hug::hug: Can you call your rheumy to tell him how anxious you are? If he's any good he will understand and reassure you or at least come up with a plan. How is your kidney blood work?

I hope this will prove to be a temporary blip. Let us know how you get on please and you need never worry about about not posting as much as you used to and would like to. You have a lot on your plate these days with the grandchildren and all.

All the very best to you and your family for the coming year.

Many hugs
Clare

 

[Maia]

I would probably ask for a referral to a nephrologist in your shoes. Or just make the appointment myself since the wait can be a long time. Especially if you've had a few of these high level U/A results over a few weeks or more. It seems like you are leaking enough protein that this is very much warranted and it will be important to make sure what kind of nephritis you have... to get the right treatment.

I'm sure it will make you feel better to get the kidney expert's advice on your particular situation; it feels good to know that you are doing all that you can do.

Good luck with everything - let us know how things go.

 

[sam101360]

Thanks Clare and Maia:

Clare, I have to guess that the blood results are out of range too since he did increase the frequency of testing.

Maia, I too am thinking this isn't a bad idea. My insurance does not require a referral, so I am starting to look ito what dr's are available and who is gthe best. I will go on from there, I just want to make sure my Rhumy doesn't havde one he works with ad agrees that i should see one (as I really don't like to go over my Drs head...he's a really nice guy and very proactive, but he is a bit prockly at times). I wont let my health suffer to protect his ego, however I will manage expectations.

Thanks again for the replies.

Stephanie