To help the doctors diagnose Systemic Lupus Erythematosus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.
1.Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2.Discoid rash – a rash that appears as red, raised, disk-shaped patches
3.Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4.Oral ulcers – sores appearing in the mouth
5.Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6.Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
7.Kidney disorder – persistent protein or cellular casts in the urine
8.Neurological disorder – seizures or psychosis
9.Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low-level of specific white blood cells), or thrombocytopenia (low platelet count)
10.Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies
11.Abnormal antinuclear antibody (ANA)
Not all symptoms have to be present at one time, and not all symptoms have to be observed by the same doctor. This is where a health team that communicates and works well together comes into play. You will notice I have bolded several things, these are my personal symptoms that led to my diagnosis of Systemic Lupus
Here is a little bit about the symptoms I experience that are used to diagnose Lupus. I experience more, but these are the ones used in the diagnostic criteria.
I have the Butterfly rash to varying degrees. Somedays it is barely noticeable. Other days it is very bright and defined. One of the things that helped me verify that this was in fact a symptom of Lupus was taking pictures of this and taking it to my doctors. I showed it to my PCP, my Hematologist and to my Rheumatologist. They all verified that it was the Butterfly Rash. I also have rashes that are sensitive to sunlight and that are made worse by sunlight. I have gone from being able to be out in the sun for long periods of time unaffected prior to developing Lupus to having to wear sunscreen all the time. Not only does Lupus cause me to be sensitive to the Sun, so do two of the medications I am on to treat Lupus.
I have ulcers, or sores, in my mouth and nose that randomly show up. This is very common in people who are affected with Lupus. I also have them in my ears, and on my scalp.
Joint pain has been one of the worst chronic symptoms I have experienced because of Lupus. It affects me almost every day. It affects mainly my knees and my fingers. Though occasionally it also affects my hips, wrists and shoulders. I am very limited as to what pain medications I can take, and even though I have been prescribed pain meds most days I opt just to deal with it.
Kidney involvement with Lupus is very common. We are closely monitoring my kidneys because my creatinine level has been elevated since August. My blood pressure has also been elevated since august which is another indication that there is kidney involvement. It is something we will have to keep an eye on to make sure we stay in front of the best we can.
Neurologic involvement is also rather common and can involve migraines, migraine with aura, and silent migraines. After my miscarriage last may I developed silent migraines and began having up to 10 a day. I was placed on Topamax at the end of August and that has helped decrease their frequency greatly. My migraines were used to meet this criteria.
Various blood disorders can occur with Lupus. Thrombocytopenia occurs when you have low platelet counts. In August-October before I got to a diagnosis if you were to look at my ER lab reports you would see my platelet counts were low. They have finally after being on treatments for a few months started staying in the normal range. We are not sure if my low platelet counts were more due to Lupus or Antiphospholipid Syndrome, as both conditions can cause low platelet counts.
To meet the Immunological disorder criteria you use to have to test specifically for Lupus related antibodies. More recently specialists are recognizing Antiphospholipid Antibodies as part of this criteria as well. Since I have APS I meet this criteria.
As you can see I have well over four of the criteria. I was diagnosed quicker than most. It can be a long daunting journey. I was diagnosed in under a year. For a lot of people it can take multiple years. I was lucky and had an amazing team of doctors that were working for me and got me to a diagnosis quickly. I was also very proactive in my health care, did a lot of research, asked a lot of questions, and didn’t back down when I knew there was something more wrong, even after being told originally I didn’t have Lupus back in December. I knew I had it. Sometimes you just know things. I know my body well.