I was asked by a member to re-post this information as a sticky so that it could easily be found. Here it is as requested
In 1982, the American Rheumatism Association published a revised set of criteria to aid physicians in making the diagnosis of Lupus. The criteria are:
Positive fluorescent antinuclear antibody (FANA) or ANA test result
A physician observing a person to have at least 4 out of the 11 criteria, either serially or collectively, should be suspicious to the possibility of lupus being the underlying disorder. However, physicians must also be careful in utilizing criteria for an individual case, as other diseases could also conform to the criteria. Presently, the diagnosis of lupus is usually based on these findings:
evidence of a multi-system disease (more than one organ involved):
the presence of autoantibodies;
the exclusion of other diseases and disorders which can mimic the features of lupus.
lupus still remains a very difficult disease to diagnose. Two reasons account for this difficulty: 1)There is no single set of symptoms that are uniformly specific to lupus. 2)There are no laboratory tests yet available that can prove conclusively that a person has or does not have lupus. Also, almost every symptom of lupus can also be easily attributed to other illnesses or disorders. In addition, the symptoms are sometimes vague or they may come and go spontaneously. For instance, fever, weight loss,
marked fatigue and weakness which are often experienced by someone with lupus, may also be symptoms of many others disorders, some more threatening, some less so.
Also, if temporary joint or muscle pain is the initial problem, here again there are so many causes of such symptoms that it may be very difficult to link these to lupus. If pleurisy is a symptom and it spontaneously clears up rather quickly, then it might be assumed that a virus was the cause and not necessarily lupus.
Often it can take years for the diagnosis to be made. Doctor's will want to determine if you are showing symptoms or clinical evidence of a multi-system disease (i.e. abnormalities in several different organ systems such as is seen in Lupus). The following are typical manifestations (symptoms) which might lead to suspicion of SLE:
Skin: butterfly rash; ulcers in the roof of the mouth; hair loss.
Joints: pain; redness and swelling.
Kidney: abnormal urinalysis suggesting kidney disease.
Lining membranes: pleurisy; pericarditis and/or peritonitis (taken together this type of inflammation is known as polyserositis).
Blood: hemolytic anemia (the red cells are destroyed by autoantibodies);
leukopenia (low white blood cell count);
thrombocytopenia (low platelets).
Lungs: infiltrates that may be transient.
Nervous system: convulsions (seizures); psychosis; nerve abnormalities that cause strange sensations or alter muscular ability.
The second diagnostic principle is to examine the status of the immune system in individuals having a suspicious clinical history. In general, physicians now look for evidence of autoantibodies. Some commonly used tests of immune status in the diagnosis of SLE are:
The anti-nuclear antibody test (ANA): a test to determine if autoantibodies to cell nuclei are present in the blood.
The anti-DNA antibody test: to determine if the patient has antibodies to the genetic material in the cell.
The anti-Sm antibody test: to determine if there are antibodies to this substance, a nuclear protein.
A variety of tests for the presence of immune complexes in the blood.
Tests to examine the total level of serum complement - a group of proteins involved in the inflammation which can occur in immune reactions - and tests to assess the specific level of C3 and C4, two proteins of this group.
LE cell prep: An examination of the blood looking for a certain kind of cell which has ingested the swollen antibody-coated nucleus of another cell.
A positive ANA may occur sometime during the course of the illness in about 90 percent of patients with SLE, but it also occurs in a variety of other illnesses and in as much as 5 percent of the normal population. It is a very sensitive test and is now more frequently performed than the LE prep.
Here is a web-site that talks about some of the medications used for Lupus: http://www.lupus.org/education/broch...dications.html
I hope that I have answered some of your questions. Let me know if you need anything further.
hi everyone my name is Candace. I have been having medical problems since my first pregnancy 3 years ago- including Toxemia/ Hellp Syndrome, premature labor, thrombocytopenia, recurrent miscarriages, placenta previa, etc. Anyways- I have a blood transfusion the last round- though I did not bleed out. The doctors still have left me to the theory that i had caught a viral and it attacked my good blood cells leaving me needing the transfusion. Anyways I am not pregnant anymore- have 2 healthy boys and not planning on anymore pregnancies due to the severity of my complications I got my tubes tied. When my OB released me he gave me a note for my practiconer and said they would want to run test. This note said: positive anitcardiolipin antibodies. They would not run the test so I gave it to my cardio. and he ran Lupus screening test (vipor venum ...etc) resulting in a Positive. When I started having the major problems I had been sick for around a month or so...having rashes across my forhead and all over my body...slightly on my cheeks. (more inflammed on my forehead though.) So after the POSTIVIE I went back to my practioner and finally they ran tests. I had High MPV, ANA Titer 1:80 neg., Positive Lupus Anticoagulant, High APTT, - I have had these rashes again and again the cheeks become brighter have a day or two but they always start wtih my forhead. I am not on heparin so the drugs have not induced these results. Anyways - my practioner has decided that I dont have Lupus but wants to diagnosis me with APS which a lot of Lupus patients have anyways (explaining my blood problems) but not the rashes not the extreme fatigue and wrists and body aches. Not that every time I am sick I am sick for long periods 2 weeks min. and I catch everything. I have written down a loooooooooong list of symptoms even dating flares? and what happened each day for a 3 week period - that dont explain just APS...what should I do? Am I over reacting - does anyone think I should be concerned- also been losing my hair slowly - its everywhere not patches but just slowly falling out- never had this before until my last preg. when my hair suddenly became brittle. I am only 24 and a mother of 2 just in need of some good advice - maybe to help me at my next appt. I have scheduled with a rheumotologist and steriods on hand for next flare in case he says. Thanks for listening sorry so long... Candace
Also I have anemia since then - and low blood counts re-occuring- also re-occuring toxemia...if I think of anything else I will write more
I was reading a book-but have lost name and author! This book stated something about the criteria being revised sometime after 1998. I believe it had something to due with a change in the blood work result criteria..If anyone knows of this. I would appreciate the feedback. In the meantime, I will look for it myself.
I'm new here and to Lupus. My doctor didn't seem to inform me much other than to say I have Lupus and hand me a prescription (Neurontin and Plaquenil).
I've been searching online for info.....I guess I'm wondering,-will I have to take these drugs forever? do the Lupus ever go away?-How did I get this dreaded disease?- I have had pain from my neck down to my toes for many months now (it's why I went to doc recently, crying in pain)
FYI- I was in a car wreck 1 yr ago (DX whiplash/bulging disc) had steroid treatments, craniosacral 4X a wk , Chiro adjustment 4 X wk....nothing seems to help........so when I finally went back to my PCP about the pain...he believes it's Lupus...Hmmmmm (I never did like this Doc.....he's in and out in 2 secs flat)
Since this accident he's told me I have Intercostal neuritis, Costochontritis...and now Lupus.
I don't know what to believe!
I've gotten a WHOLE LOT of ANXIETY since all this pain ....and the pain seems to be getting worse rather than better ((
Thanks for listening.
Hoping to hear from you (or someone) soon!
Welcome to our group! I sent you a Private Message. When you get an opportunity, just click on that box in the top right corner of the page that has "Private Messages:" highlighted in blue. Click the blue words to read your P.M. from me. Thanks, and make yourself at home!
Your Hopefully Humble Mod...
I see that Rob has sent you a private message and I am sure that he addressed all of your questions. Please let me know if you need anything further and I will be more than happy to help you in any way that I can!
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Look For The Good and Praise It!
I managed to "obtain" a lupus diagnosis based on minimal criteria.
I was referred to a rheumatologist based on consistently elevated ANA; Rheumy#1 ran a battery of tests and could find nothing wrong with me....
A few years later, I had a serious skin rash condition: winter months+stress+rashes all over+cracked knuckles leading to diagnosis of severe psoriasis by a dermatologist and immediately putting me on a TNF inhibitor, Enbrel. Soon after, I saw Rheumy#2 for another opinion (Re: ANA still elevated and I was yet not sure what was going); he ordered a lupus profile (bloodwork/urine) and thought the skin rashes might instead be lupus and asked for skin biopsies. The skin biopsies confirmed the original psoriasis diagnosis, but the bloodwork showed elevated Anti-SM and Anti-DS DNA antibodies highly suggestive for lupus. The Rheumy thought the Enbrel might be causing this and asked for the treatments to stop; The Enbrel was terminated and a few weeks later the bloodwork came back "normal" except for the elevated ANA.
A few months later in the middle of August, I started to have facial blisters, the Dermatologist thought this was lupus (!) and ordered skin biopsies to confirm; the pathologist was thinking bullous pemphigoid, not bullous lupus. Derm#1 was confused and referred me to Derm#2 while starting me on Prednisone followed by Imuran to try to help with the blisters. Derm#2 confirmed the "lupus" (?) diagnosis based on pattern of rashes/blisters across the face. Both derms were good with Plaquenil/Imuran for lupus/psoriasis.
In the meantime, the rheumy remained skeptical but did admit the Imuran was effective against most of the skin lesions (whether psoriasis or lupus (?)) (The Imuran was pretty effective knocking down the Westergren counts which had also been consistently elevated). He finally got onboard with the lupus diagnosis after one of the bloodtests came back with elevated RNP antibodies suggestive for MCTD.
I've yet to count to four (4) on the number of symptoms suggestive of lupus.
Symptoms: Skin rashes/bloodwork (sometimes)
Medications: Imuran/plaquenil/Allopurinol/BP meds
Wow.You know its so hard isnt it.All the doctors you have to see.I was diagnosed with lupus then undiagnosed and still fighting the doctors.So many times nearly given up,but i come here read posts and gather strength.I hope you are feeling a little better and today was a good day for you.I have rashes and get a very light pink butterfly rash which only comes out when doctors are not in sight lol.I have photosensitivity,immune disorder,swollen muscles n joints,headache hell,nose sores,dizzy,depressed n mad lol.......so i do hope they know what they are doing with me.Recently,bare in mind at first they said oh you had a nervous breakdown which it was'nt....i now know i have fibromyalgia,reynards,sjogrens.......so im nearly there.Until i find out for sure my label is chronic fatigue syndrome (M.E).
I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx
I didn't see anything about diagnosis by skin biopsy in your post. This was how I was diagnosed by derma, is that a rare thing?
Although I have some of the other symptoms mentioned and was wondering why my previous GP never tested me for SLE.
If there is another thread about skin biopsy for SLE? I will try and check new to getting around site.