UCTD and Kidney involvement

Hi Everyone,

  I haven't been on in a while. Seems I only post when I have a new problem.  I will try to do better.  I just had some lab work done for my upcoming Rheumy visit and my PCP said my estimated GFR indicated that I may have declining kidney function.  In the last six months it has been 55 and 53. Was wondering if anyone with kidney involvement could comment on this.  I am currently diagnosed with UCTD.  Would this result help give me a more definitive diagnosis.  Thanks for any responses.

Beth

Beth, I'm sorry you are going through this. Problems with your kidneys might lead to a more definite diagnosis, especially if you ever need a biopsy. A biopsy should show whether you have lupus nephritis. I had some mild kidney issues over a year ago, but they resolved with prednisone so I never ended up needing a biopsy. Do you know what the next step is with your kidneys? If things don't start looking better, you could ask for a referral to a nephrologist. Take care and keep us updated.

Hi Beth, nice to meet you.  I recently have just been going through the same problem where my GFR fell to 59 then to 53.  I believe if it is possible kidney disease the creatine clearence/serum and BUN as well as the calcium and potassium levels are off (high/low).  There are also high protein and/or blood cell casts in the urine. 

Once they found some of these tests abnormal, I was put through the cat scan to check for kidney stones, etc. and had comparative bloodwork drawn and another urinalysis.  The scan results were negative but the other lab work came back with mixed results that showed my GFR continued to fall.

For several months I was told I had kidney disease.  I finally got an appointment with the nephrologist who was concerned it was lupus nephritis, but determined it was not and perhaps it was my bladder.  I had another GFR test recently and it went back up to 59, so I am unsure of the cause at this point.  The best thing is to have the nephrologist examine you to make sure it is not glumeronephritis or lupus nephritis which it can sometimes be.  It may be the start of a possible kidney disease or something else completely different like the bladder. 

Also, they need to determine if it is chronic or acute kidney involvement.  With acute involvement there is a good chance that they can treat it and your kidney will be fine. Also, the nephrologist needs to determine to what degree are the kidneys damaged, if he thinks it is kidney disease.

Try not to worry too much.  I was very worried and I didn't need to worry so much.  I was told the GFR has to fall between 20-30 before considering dialysis.  I don't think they start dialysis until under 20.  If it chronic it may take a while (years) before it falls that low.  There is some time left to figure this all out and from what I can understand there is a lot they can do to slow it down.  Let me know how it goes - Kristin

Ps. Always Rosie  - I have literally been told by several doctors they would not listed as lupus. Just in case I ever did get insurance, they said the insurance companies would deny me.  That was years ago.  I still don't have insurance but still need the diagnosis to get reliable medical treatment instead of proving it over and over again.

Thanks for everyone"s responses.  Now here's the kicker.  I called my rheumatologist to see if he wanted any more lab work prior to my visit and he said that this decrease in my GFR was probably a statistical abnormality and not to worry about it.  I questioned him further and told him my PCP was concerned and if my GFR remained low or decreased further by the end of the year he wanted  me to see a nephrologist.  My rheumy just said maybe that's a good idea, I can't tell you much about the kidneys.  Shouldn't a rheumy have experience with kidney function/damage?  Now I'm not sure I trust him anymore.  Haven't gotten that warm fuzzy feeling lately.  Maybe I should just stick with my PCP.

Thanks for listening!!!!

Beth

Beth: Personally, I think the rheumy should have some knowledge of kidney involvement, perhaps not a vast knowlege, but some. I believe that half of the lupus patients have kidney involvement. That is a pretty high number of his patients that will come across this problem. Kind of says something about the doctor and his interest in treating lupus. Definitely suggest a nephrologist. Might as well get cozy with one now. Even if it turns out to be nothing at this point, it may benefit you in the future. I am starting to notice a pattern with a few of us and may be in the beginning stages of a larger issue.

Patty and Rosie: Thanks for the concern, Yes it is very tough and very scary without any insurance. I go to a clinic, not the best but it is something. Treatment is another story for me. They treat most things as they come up, like my heart, muscle problems, neuro, swollen this or that, etc. They do not treat the Lupus itself. I have been told by numerous doctors that I cannot take the Prenisone, the Plaquenil, the Methotextrate, etc. I am still pushing for and hoping I will be able to take the Cellcept. I have central, peripheral and autonomic nervous system damage and cannot take most medicines because it will make the problems worse. To add to that I have almost no immune system left. I can only take two antibiotics out of all of them (one is oral and one is through the IV), if I become immune to the oral/IV, I stand a very limited chance of survival. I am quite prone to severe staph and strept infections among many others. Therefore, as hard as it is for me to accept, I understand the doctors' decisions not to allow me to have these medications. I have a hard time understanding that there really aren't many options for me. Someday, I hope my situation changes and I can see a top notch specialist who likes weird Lupies like me. So far, this is the best it gets. I just keep my eyes open for opportunities. I appreciate your care - Kristin

Hi all,

Many of you have commented on rheumys and their knowledge of kidney function. I have both a rheumy and a nephrologist so I thought I'd tell you my experience. My rheumy will order labs to check my kidney function but thats it. He always calls me in a panic when my labs come back abnormal and tells me to go to my nephrologist. My neph is usually unconcerned because the labs are good for me. What my rheumy thinks is horrible my neph thinks is good. It has gotten to the point that my rheumy hates to even run labs and he tells me that- he won't deal with my kidneys because he is not an expert in that field. Of course I had a nephrologist before I had a rheumy, and I see my neph much more frequently so it doesn't matter to me. Perhaps some others have different experiences.

Sandy