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Other Platelet Disorders

Possible Lupus Nephritis

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11 years 8 months ago #39284 by Rob16
Possible Lupus Nephritis was created by Rob16
I was really hoping I would never have to post in this category!

I am concerned that Ellen (my wife) may have developed Lupus Nephritis. My only real doubt is a lack of a positive ANA.

I have long suspected that Ellen’s ITP might be the tip of an SLE iceberg, based on a history of ITP, skin rash, thinning hair, mouth ulcers, migraine headaches, and one seizure. Lately, she has added an increase in frequency of migraine headaches (nearly every day), increased fatigue, and pain and popping in her neck (possibly arthritic). If this is lupus nephritis that would clinch it.

Her most recent labs point to possible renal impairment:
GFR was 47 (Low) [Normal: >= 60] indicating chronic kidney disease.
Creatinine was 1.29 mg/dL (High) Normal: 0.40 mg/dL - 1.00 mg/dL
Potassium, Chloride, and Osmolality are all at or below the extreme low end of their respective normal ranges.
Urinalysis has not been done recently.
Also of interest was the presence of Absolute Immature Neutrophils and elevated levels of Absolute Basophils, with normal levels of other leukocytes, suggesting an inflammatory process.

It looks like we will be needing a referral to a rheumatologist.
Does anyone know a really good one in Atlanta?
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 8 months ago #39302 by Sandi
Replied by Sandi on topic Possible Lupus Nephritis
What does her doctor think? A urinalysis is needed to see if she has protein in her urine. I'm surprised that hasn't been done.

All you can do is see the Rheumatologist and go from there. Hopefully, he/she will order more specific tests and not blow her off based on the negative ANA. I hope it's not nephritis! Please keep us updated.
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11 years 8 months ago #39309 by Rob16
Replied by Rob16 on topic Possible Lupus Nephritis
The tests were run by her endocrinologist, while looking for something else (which, thank God, he did not find!) That is why no urinalysis yet. He is ordering a repeat of the Basic Metabolic Profile, and we will request he add urinalysis. Older urinalyses do not show proteinuria, but showed low specific gravity on six consecutive tests since 2006 (not explained by diabetes or excess water intake, and simply dismissed each time!)

Not even sure whether to skip going through her PCP. Our insurance doesn't require a referral to see a rheumatologist, but her PCP might get her there faster.

Unless serum creatinine (and therefore the GFR) was erroneous, I can't imagine what it could be other than nephritis. The GFR is the test used to rate levels of chronic kidney disease, but multiple positive readings are required, so perhaps I am jumping the gun. Oddly, rheumatologists use urinalysis-based criteria to classify lupus nephritis. I don't know why one rather than the other, or which is more valid.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 8 months ago #39312 by Sandi
Replied by Sandi on topic Possible Lupus Nephritis
I will admit that I don't know a whole lot about nephritis. I've never had more than trace amounts of protein, so I have not had to worry about it. I will say that my Rheumatologist usually runs a urinalysis and GFR during my visits.

I was going to tell you the same thing though about jumping the gun. When you get dragged through one health problem after another, you eventually get to the point where you honestly stop worrying unless someone tells you that you should. I've had so many doctors scare me with something out of the ordinary and when I finally saw the specialist, they told me it was nothing. I've had too much pointless worrying so I quit doing it.

You are so well informed, Rob! Ellen is lucky to have you on her side. Every family needs at least one medically savvy person in it!
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11 years 8 months ago #39314 by Rob16
Replied by Rob16 on topic Possible Lupus Nephritis
Thanks, Sandi, and we are all lucky to have you... times 1,000!!!

Gosh, you've been busy lately. I've been dealing with a multitude of very real crises the last few weeks and trying to catch up on the board has been overwhelming!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 8 months ago #39316 by Sandi
Replied by Sandi on topic Possible Lupus Nephritis
It's easier to keep up by checking it frequently through the day. I'm lucky to have that option. Turned my back to sleep last night and we had an intruder sneak in with spam. I had two alerts this morning thanks to my helpful bouncers, Jack and Norma!

Current scare that popped up today:

I had a chest x-ray to follow up on pneumonia. I got a call when I got home from the Dr. at the Urgent Care center. He said that he is recommending a chest CT because I have a nodule on my lung. I already knew that because my Rheumatologist told me two months ago and gave me a script for the CT. I hadn't gone yet though because of insurance problems and Christmas coming, etc. Anyway, the call today made me realize that I need to get this done and stop putzing since it could be serious. I tend to ignore so many things these days because I just have too much to take care of all the time.
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11 years 8 months ago #39324 by Rob16
Replied by Rob16 on topic Possible Lupus Nephritis
I was just this minute talking to my son about my tendency to take care of everyone but myself. In my case it is pretty dysfunctional (codependence), but I do find it very rewarding to make a difference in others' lives, so maybe I am taking care of myself in the process. Still, that is no substitute for my need to stay healthy. Balance in all things!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 8 months ago #39340 by Sandi
Replied by Sandi on topic Possible Lupus Nephritis
Good advice!