Is anyone else in a similar situation?

I am a 28 year old female and I reside in the US. I have been diagnosed as having stage 3 ckd as my creatinine levels are now up to 1.6 pushing my gfr to 45. Ultrasound was clear other than a small, simple cyst that was first found on a CT over a year ago and it hasn't changed in size. My 24 hour urine came back clear (no protein, blood, etc.) and the creatinine levels were within normal range in my urine. I am a smaller build, just about 5'2 and around 120lbs. I don't have high blood pressure nor do I have diabetes. My nephrologist is stumped. I do have an autoimmune disease called antiphospholipid antibody syndrome, but based on my urine analysis he doesn't think it's the cause. I was previously taking metformin for PCOS, pepcid for a hiatal hernia, and aspirin for the APS but since I am no longer trying to conceive I stopped the metformin and aspirin. I also went off the pepcid in case it was the cause behind my critically low magnesium. Many of my doctors were under the impression I shouldn't be concerned, but at the urging of the obgyn I went to a nephrologist. Has anyone else had weird results like this? I feel like I'm all over the board and now if my creatinine goes to 2.0 I am supposed to have a biopsy. However, I've heard the biopsy can also come out as "unknown" so I would hate to go through it for no reason.

[MAS_Nurse]

Hi Jl,

It is hard to advise in your situation.It is obviously causing you concern and we would always suggest that you go back to your medical professionals as we are a peer support forum, not a professional medical advice service. We empathise with your frustrations, and though folks here may well be in the same boat as you, we can only share from personal experiences not professionally, and anything said here may not be helpful in your case.

Do keep us in touch with what is happening and keep posting.

Best wishes,

MAS Nurse and Moderator

[madonbrew]

Hi Jl22222,

I am 40 years old and have IgG4 systemic disease (aka IgG4 RD)...which is a very rare autoimmune disease which has affected my kidneys and pancreas etc. My egfr is 37 at the mo. It took my doctors a long time to come up with my diagnosis. As you have an autoimmune disease already it could be worth asking your doctor to check your IgG4 level.

I have been treated with steroids in the past.. which are good for my physical ill health but bad for my mental well being &has lots of side effects long term. I now have a drug called Rituximab...it's by infusion...it's a big drug&expensive...I'm in the UK so get mine on nhs but I think it's £4000 per infusion...if not more. But a first step could be worth getting it checked out!