Lupus

Does anyone here have Lupus? I'm curious if anyone does. I have a lot of health problems and doctors aren't sure if some of them are related to Lupus or not. Would be nice to find others out there who have the same disease.

I dont have lupus but I have had experience of it. I hope that you manage to connect to people here that understand what you are going through

Cracked

Thanks again Cracked.

No worries

Cracked

While I don't have lupus, I did experience drug-induced lupus from taking minocycline for rosacea. I do have spondylitis, which is another autoimmune disease like lupus. What did you want to know?

I've had it for 5 years now. They don't think kidney stones are related but ever since I've been diagnosed I have had dozens..

So I started writing this long drawn out post that debated whether there was any relation between Lupus and kidney stones only to find that the doctors are both wrong and right. They are wrong that there is no relation, yet according to research that I'm assuming was done by doctors they are right that there is a connection. What is to be sure a long drawn out post (I'm not good at brevity, sorry) outlining my logic follows.

First off, from my own research about my own autoimmune issues I've noticed that there's a lot of overlapping between diseases which tells me that this field is still in its infancy and they just don't know a whole heck of a lot. After an abbreviated search I came up with a ton of people with lupus complaining about kidney stones with an invariable chorus of, "Lupus patients are not usually at increased risk for kidney stones," from their doctors. Yeah, whatever.

Now first I'll give voice to the persistent cry of doctors that, "kidney stones and lupus aren't related"... from the Lupus Foundation's site:

"Kidney stones can certainly occur in patients with SLE or SLE nephritis, however I do not believe they would predispose to flare. I also have not observed a higher incidence of stones in my patients with nephritis compared to other groups. The best way to prevent stones is to dilute the urine as much as possible, and that usually means increasing fluid intake. Consult your doctor before doing so, because some patients with heart disease or kidney disease need to be on fluid restriction for example."

And:

"Is there a relation to having lupus and having chronic kidney infections and stones? If so, is there a way to prevent them? -- Greenfield, WI Lupus patients are not usually at increased risk for kidney stones. However, kidney stones are common in the general population and lupus patients may get them..."

What evidence is provided to prove these claims? Apparently the old, "because I says so," defense as far as I can tell.

I will now add my own "however" to this. After this I decided to look up "kidney stones" and "autoimmune", and saw a few mentions of a connection with Sjogren's Syndrome which is featured on....wait for it...the Lupus Foundation of America's website. Shesh. Apparently, and I quote, "Sjögren's syndrome can occur: alone OR in association with other autoimmune diseases, most commonly systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA)."

So there's Sjogren's Syndrome, which you may or may not have. BUT, I will now add a second, and frankly more crystallizing "however" in the fact that I came across a patient stating, "All of my kidney problems are related to Sjogren's. My kidney stones are caused by distal RTA, which is common with Sjogren's. The inflammation in my kidneys is from the Sjogren's as well."

"What the heck is distalRTA," I asked myself. Turns out she was talking about Distal renal tubular acidosis. If Wikipedia isn't reliable enough for ya, I found on the National Kidney and Urologic Diseases Information Clearinghouse, a subset of the National Institutes of Health website, "Renal tubular acidosis (RTA) is a disease that occurs when the kidneys fail to excrete acids into the urine, which causes a person's blood to remain too acidic. Without proper treatment, chronic acidity of the blood leads to growth retardation, kidney stones…" Further along on the same website it states, "This disorder may be inherited as a primary disorder or may be one symptom of a disease that affects many parts of the body. Researchers have discovered abnormal genes responsible for the inherited forms of the disease. More often, however, classical distal RTA occurs as a result of systemic diseases-diseases that affect many organ systems-like the autoimmune disorders Sjögren's syndrome and lupus, which also attack the distal tubule." SO, after that I'd love for these doctors to explain to me how there is no connection between lupus and kidney stones. Seriously, wtf?

I'm not sure how much this helps with actual treatment, but when doctors tell you this crap in the face of such evidence, on top of an avalanche of patient anecdotes, it makes you feel insane. For crying out loud. This isn't even like six degrees of Kevin Bacon, we're talking about one freaking degree here! Pisses me off to no end. I suppose it's possible that your lupus and kidney stones are unrelated, but to say that they are never related when a short search finds evidence to the contrary is nothing short of...I don't know what...willfully negligent at the very least.

I will now get down off of my soapbox. Is this the kind of information you were looking for? Or was it something else?

I will close quoting myself from a response I made to another poster about some issues they were facing, you have to be proactive about your health and do your own research. Doctors are helpful, but they are human, which means by definition fallible. That includes any therapists, psychiatrists, or folks on the internet who just want to help Trust your instincts when you're talking with them, or anyone for that matter. While sometimes you do need to hear things that make you feel uncomfortable, trust yourself to tell the difference between what might be uncomfortable but what you need to hear, and someone trying to give you a line of crap or is just plain incompetent.

Finally, I want to say that my heart goes out to you. While I realize they are different things, my ex-boyfriend who was a Marine had gallstones and was curled into a ball crying like a baby, so really, take care of yourself when you're going through all that. Plus I know lupus with or without kidney stones SUCKS, so again, take care of yourself.

Thanks so much for all the info. I also found it strange that thee 3 urologists I've seen don't have any idea of what's causing them.. Hmm

You might consider trying to see a "nephrologist." From the Lupus Foundation site:

The form of lupus and its symptoms determine what type of doctor you will see. Most people who have mild to moderate disease will be treated by a rheumatologist, who specializes in the diseases of joints and muscles.

However, if your lupus causes kidney problems, you will also see a nephrologist, a specialist in diseases of the renal system.

Regardless of whether or not the lupus is related, this is definitely sounds like a renal issue. Hope this helps.

Thanks. I have a rheumatologist.