Lupus: Signs and Tells
By A. G. Moore 4/28/2013
Public Domain Wikimedia Commons
Sometimes I don’t take my own advice. Acknowledging this helps to keep me modest. Yesterday I received a strong dose of modesty as my husband’s predictions of impending trouble were realized. The truth of his insight became obvious during the night: my body confirmed what my husband had observed for several days, what he had insisted on before we turned in the night before. A flare was upon me. The thing about catching a flare early is that it’s usually easier to chase lupus away if the disease is caught on the upswing, before it’s taken hold.
Unfortunately, for my husband and others I love, signs of the flare included a compromise of my ordinarily good nature. Today, I must apologize to people–not for the first time–because I was irritable and rude.
Then I’ll take my prednisone.
As everyone who has lupus knows, reluctance to begin an immune-suppressive regimen can seem reasonable. When lupus consists mostly of pain and lack of vigor, then taking medicine can seem self-indulgent. In my case, lupus has run a relatively mild course, so the temptation to ride out a storm without medicine is quite strong.
There are risks, though, to this laissez-faire approach. Lupus has, on occasion, turned on me and become vicious. Doctors have scratched their heads and alarm bells have gone off as I lay on a stretcher with symptoms that didn’t fit into any recognized pattern.
So I’m careful now, about guarding against vicious lupus episodes. I look for signs that tell me when a serious storm is brewing and I need to take action.
Signs of trouble for me do not always occur in a cluster. Some by themselves are compelling. For example, if I start to twitch–not just an eye or a jerk or two in my leg, but unremitting, sleep depriving, multi-site twitching–then I take action. ‘Cause there’s trouble coming.
If my gut acts up and no amount of coddling will sooth it, I take action. ‘Cause there’s surely trouble coming and I never play chicken with when my gut is involved.
I don’t have lupus nephritis, which can be active without any signs such as those I just described. Though some 40% of lupus patients present with nephritis early in the disease (first 5 years), about 5% of patients will develop kidney problems later. The material I cite below suggests that the best outcome for nephritis patients is realized with early diagnosis and treatment. Since lupus nephritis can be silent, invisible, without early signs, it’s important that all lupus patients be monitored from time to time to see if this condition is developing.
What the literature says about treating early
There is little disagreement in the research community about the wisdom of getting early treatment when lupus attacks organs. To illustrate this cautious approach, I did some reading on two common manifestations of lupus. In both these cases, lupus nephrttis and GI lupus, early diagnosis and treatment are uniformly recommended. I am assuming we can extrapolate this cautious attitude to other forms of lupus where there is organ involvement.
While not everyone with lupus has nephritis, this symptom is one of the first a doctor will look for when diagnosing the disease. The consensus about management of lupus nephritis is clear: early intervention saves lives and helps to prevent kidney failure. In 2008, the American Association of Kidney Patients issued a report about pediatric lupus nephritis. The report concluded: “Early recognition of the pediatric patient…with prompt intervention…may prevent kidney failure…”.
In 2006, an article in the The Journal of Rheumatology concluded:”…early initiation of immune-suppressive treatment might be critical for the outcome of patients with lupus nephritis”.
And, finally, a 1999 article in the American Journal of Nephrology stated: “In most patients today, there is a gratifying response to early treatment…”
The consensus about early treatment of lupus nephritis is mirrored in recommendations for treatment of gastrointestinal lupus. Most sources suggest that GI lupus is often caused by lupus vasculitis, which is a very serious, life-threatening condition. However, there are aspects of lupus expressed in the GI tract which may not be caused by vasculitis. Two of these are pancreatitis and intestinal pseudo–obstruction. Early treatment in any of these instances is essential.
A 2010 article in The World Journal of Gastroenterology described lupus mesenteric vasculitis, as “…a main cause of acute abdominal pain in SLE patients”. The authors of this posited that prompt diagnosis and “….appropriate intervention can avoid potentially fatal complications of…lupus mesenteric vasculitis”.
With regard to lupus pancreatitis, the same authors concluded: “As many as 57% of SLE-related acute pancreatitis cases may develop complications if not treated promptly.” And, finally, the authors discussed psuedo-obstruction. The recommendation for early treatment was unequivocal: “Early diagnosis and prompt treatment is critical to improve the overall outcome of SLE-related IPO (intestinal pseudo-obstruction) patients.”
As for my current lupus flare, this is small potatoes. I’m paying attention and treating early. I am confident that this flare, like so many others, will subside quickly. Then my bottle of prednisone will be retired to a dark corner in the cabinet where it will wait until the next time one of my “signs” appears.