Living with LUPUS [2]
I’d like to start by thanking everyone for their support in getting this site moving in the right direction. I’ve learned so much from from your comments and from the research I’ve done for the articles here. I was feeling pretty discouraged about the site and the lack of readers and comments, but I think we are now going to be able to make this site a valuable resource for lupies and their friends and families.
I’ve finished the second chapter of Living With Lupus: All the Knowledge You Need to Help Yourself
Diagnosis: What Makes the Difference is the title of chapter 2. A lupus diagnosis is not simple and is usually made by a specialist. A primary-care physician will not usually possess the necessary depth of experience with lupus, and often will refer the patient to a specialist. Even a specialist faces a difficult diagnosis. Blau states that the doctor’s conclusions will be based on a combination of three factors:
- The patient’s complaints. This is difficult because there is a huge overlap with other symptoms related to other connective-tissue disorders, which include rheumatoid arthritis, scleroderma, dermatomyositis, and polymyositis.
- Established diagnostic criteria. These criteria were developed by the American College of Rheumatology and are known as the ACR criteria. I’ll list these later.
- Other factors. Diagnostic tests that rely on two concepts, sensitivity and specificity. I learned a lot from these links, but the short explanation of all of it is that there is no diagnostic test that will give a 100% accurate diagnosis of lupus; therefore, a diagnosis must come from a combination of analytic factors.
There are eleven diagnostic criteria for lupus as determined by the American College of Rheumatology. A patient must exhibit four of the eleven criteria, but not necessarily all at the same time. The Lupus Foundation website has a brief explanation of the eleven criteria. I would like to look at them in depth, but I think that may be better accomplished with a separate post.
According to Dr. Blau, there are other indications that may lead a doctor to suspect lupus:
…there are a number of other signs, symptoms, and test results that, if present with others, will lead an experienced specialist to consider the possibility that a patient may have lupus. Some are considered more significant than others. Among them (the first two were included in the earlier, 1970s criteria but were later dropped). [p. 30]
These other indicators are as follows:
- Hair loss. 25% of all lupus patients experience some degree of hair loss.
- Raynaud’s phenomenon. Dr. Blau mentions that there are varied estimates of the percentage of lupus patients who also suffer from Raynaud’s phenomenon, but I found an article from the Cleveland Clinic that puts the value at approximately 33%.
- Free DNA. Apparently, high levels of freely circulating DNA is often a result of the cell destruction caused by the antibodies in lupus. I really don’t understand this very well, but I did find an article if you happen to be interested.
- High sedmentation rate. This the sinking velocity of red cells within a quantity of drawn blood, and is often referred to as the “sed rate“, one of those things I’ve heard mentioned for years, but had no idea what it meant until now.
- Other antibodies. This refers to the existence of autoantibodies that attack the patient’s own cells, tissues, and organs. Specific tests can determine what types of autoantibodies are present and what substances they target.
- Serum complement. This refers to a finite amount of proteins, referred to as the complement system, that act as part of the immune system. Since the proteins are drawn to areas where antibodies are active, a low serum level in the general circulation can be indicative of lupus.
- Rheumatoid factor. The rheumatoid factor is a blood test used in the diagnosis of rheumatoid arthritis.
- False-positive AIDS test. According to VirusMyth.net, SLE is one of the identified factors that can cause a false-positive result on the ELISA test for the HIV antibody.
The chapter ends with a discussion of how lupus can be confused with certain disorders, like the childhood illness commonly known as “fifth disease” and technically known as erythema infectiosum. Lupus is known as the “great imitator” because of the difficulties involved in reaching a diagnosis. Previously, syphilis held this title, which is ironic, since a false-positive test for syphilis is one of the eleven criteria for a lupus diagnosis.
I know that my wife’s diagnosis at age 15 is remarkable considering how many people suffer for years, possibly decades, with lupus before receiving a positive diagnosis. This leads me to some possible areas of discussion for this chapter:
- How long did it take for you or your loved one’s lupus diagnosis?
- How many of the eleven ACR diagnostic criteria for lupus do you or your loved one exhibit?
- What were or are some of the “roadblocks” you or your loved one have encountered while trying to get a diagnosis?
I was just talking to my wife about the ACR diagnostic criteria, and she has or has once had all eleven of the formal signs and most of the other indicators.
I’m still a lupus-suspect diagnosis. I starting seeing a rheumatologist for my illness in February of this year and got sick around May of last.
I presented initially with 3 of the criteria.
OH, roadblocks. My primary care physician of 5 years threw up his hands and told me he did not know enough about autoimmunity to help me. He also asked if it was a possibility if I was crazy because he ‘couldn’t figure me out’. Yes, I’m serious. I had a positive ANA 1:640, sky high sed rate and C reactive protein, joints so swollen I could barely walk. sigh.
I found a reputable rheumatologist who has not diagnosed me with lupus, but yet is treating me as if it is so with lupus meds. It takes time. I personally don’t want the diagnosis!! But is inevitable. Right now I’m dianosed with MCTD, dermatomyositis and palendromic rheumatism.
Jeff, author here. I do hope you’ll pick up the second edition, retitled LIVING WITH LUPUS: THE COMPLETE GUIDE. In medicine, a great deal can change very quickly, and more than a decade elapsed between the first edition (1993) and the second (late 2004; Da Capo Press); indeed, things have even changed since the latter, and a few corrections will be incorporated in the next printing.
The diagnostic criteria haven’t changed since the first edition was published, and that chapter contains much the same information as before, improved (we hope) by some reorganizing. But we look at a number of new and future treatments. And we devote increased space to the various conditions that overlap with lupus or bedevil lupus patients with marked frequency, including APS, fibromyalgia, recurrent shingles, and so on.
We also include a list of links to Internet sites–not, unfortunately, including this one, which apparently didn’t yet exist when the book was in preparation.
If you have any comments or questions about the newer edition, I’d be happy to reply here.
–Dodi Schultz
@Dodi – I just ordered the second edition from Amazon and all future discussions will be based on that edition. Thank you so much for being willing to help answer some questions.
Jeff, I just posted a comment somewhere on the site asking what had happened to my FIRST comment. I found it. Perhaps I’m unusually low-tech, but it seems to me unusually hard to follow continuing discourse/exchanges here. Any chance of reformatting so that everything comes along in chronological order?
BTW, illustrating my point about change: a specific medication has just been FDA-approved for fibromyalgia. And questions have been raised about one of the lupus drugs. Even LFA (my book, incidentally, has its seal of approval), from what I’ve seen of its Website, can’t keep up and doesn’t try.
– Dodi Schultz 11/24/07
@Dodi: I try and keep up with a Google alert regarding lupus medications, but even that doesn’t always catch everything.
There may be a widget that I can add to one of the sidebars that will make it easier to follow discussions here.
I will investigate and do what I can. I got the second edition of your book a week ago, and will continue working through it.
hey y’all
i’m getting the idea that the LFA’s main thrust is t o get the word out to the public about what lupus is. and lately they seem to be doing a fantastic job at that. they put outa lot of literature (brochures) and are in the middle of a big PR campaign.
there are other lupus groups out there. for example, the alliance for lupus research is focused entirely on research. that is founded by robert wood johnson, an MD whose daughter has/ had lupus.
there are several others, but i’d bet that groups is most up to date. no one organization can be all things to all people so i am grateful that there is more than one org out there, tho i wish they’d coordinate… there’s some group in NY city that does a walk every year and declares march.. or may? to be lupus awareness motnh, when LFA uses october (which unfortunately is the same as breast cancer awareness, a tough shadow to crawl out from under) … the NY group uses the color orange and a “loop” (orange bracelet) while the rest of us use purple and a butterfly.
so i gotta say public awareness still ahsa way to go, but it is far better than in 1992 when i was diagnosed. the reason we patients are secretive about our diagnosis is that we don’t want to have to explain lupus and calm people’s fears that it might be contagious, plus we don’t want to be treated like we have the plague.
Carla, you’ll enjoy–not quite the right word; let’s say you’ll feel pangs of recognition at–a site called “But You Don’t Look Sick,” by lupus patient Christine Miserandino; it’s one of those I list in my book. The URL is:
http://butyoudontlooksick.com/
Yes, the LFA does its best, as do the S.L.E. Foundation in New York and its affiliated Lupus Research Institute (a separate outfit from the Alliance). My point was simply that developments occur fast these days, and no one Website is able to keep up. A blog like this one is often able to get news up faster than a more formally organized site, which must often await a multitasking webmaster’s attention to have text changed or added.
–Dodi Schultz 11/29/07
I think I will just filter the news alert feeds that I receive and then index them as a single post on the weekend.
Is lupus contagious. The mouth sores and etc. It is a virus? They may catch a germ because immune is low and then pass it on. Please, tell me the truth, I have asked out on a date, with a person who has it. Thank you
Lupus itself is not contagious. As far as the mouth sores are concerned, I don’t believe those are contagious either.
As far as other viruses are concerned, it’s the same as with any other person you might date, lupus or not.