Should I see a Rheumatologist or request Kidney biopsy?

[gailtg]

I am a 51 yr old female.  During my annual check up in October, my Provider found my creatinin level elevated and a high sed rate.  I have had controlled blood pressure for years. Since October, my GFR has dropped to 35 with a continued increasing of my creatinin to 1.57. ANA tests have been positive (1:320).  I have seen a nephrologist twice . . which has only produced a "watch and wait" attitude. Multiple myloma has been ruled out.  Nephrologist did mention quickly the possibility of a kidney biopsy in the future.   Although the most recent nephrologist's comments to my Provider indicated " no clinical sign of active lupus at this time" and lupus has been discussed with me as a possibility . . there has been no diagnosis.  The daily symptom I am experiencing is anxiety and go through spells of being tired.  I am just watching my GFR dropping every two months and no one seems to be doing anything. I have no diagnosis. Reading info regarding lupus SLE . I know it can take a long time to diagnose  lupus. Where do I go from here?  I like being proactive versus reactive.  Should I get a referral for a rheumatologist who might take a better overall look at lupus?  Or do I press for a biopsy to find out what is causing the kidney failure and make appropriate treatment plans??

[CHRITINA589]

My nephrologist did a biopsy on my kidney and found the lupus in my kidney.  Had he not done this we would still be looking. He says that lupus is very hard to diagnose. I have had this for 5 yrs now.  I am currently on Cellcept,best drug ever, which there is a generic one now.  I was just told thatmy lupus has resolved.   I still have lupus, but my kidney function is back to almost normal.  I use to have protein being stored in my legs which made them swell, when I urinated, it looked like I emptied a bottle of soap into the bowl, it was the protein being dumped out into my urine.  Hope they find out what is the problem.  If your doctor doesn't help you, get another one.  I just found a rhematologist that I like , the first one was not very nice.  hope this helps! hang in there!

[Sjoggie]

Since there are a variety of auto immune diseases I think if I were you I would see the Rheumy.  That being said, do some checking around and get some good recommendations, preferably from patients as well as doctors, who have seen the doctor you are considering.

While you would think a specialist should know his or her stuff this is not always the case.

I have sjogren's syndrome and so help me I had a Rheumy try to tell me this that this disease only gives you dry eyes and a dry mouth plus maybe RA.  I should send her some books.  

I am new to this disease but it can do many things including mimicking other diseases such as ms.

A good Rheumy should be able to run a good blood work set that should tell him/her a lot.  You need a decent dx so you know what you are dealing with.

You need to be able to trust your doctor and I rather would not be happy with the wait and see attitude when kidney failure is a possibility.  To me, this would seem like an emergency, but then, that is just me.

I wish you the best.