Blog Posts on this website
 

Writing About Lupus

By A. G. Moore


5/23/2013 The Skin and Lupus
5/14/2013 ANAs in the Lupus Puzzle
5/10/2013 The Older Patient

4/28/2013 Lupus: Signs and Tells
4/20/2013 A Good Night's Sleep
4/8/ 2013 Brain Fog

3/29/2013 Lupus and Travel
3/20/2013 Lupus Patient Compliance
3/11/2013 Lupus and Drug Allergy
Sulfonamides (Sulfa Drugs)

3/1/2013 Lupus Pancreatitis
2/16/2013 Lupus and Sulfasalazine
2/9/2013 Lupus and the Gut
2/1/2012 Lupus and Stress
1/26/2013 Lupus: Assessing
          Disease Activity

Lupus and the LUMINA Study
Living in a Lupus Bubble
1/2/2013 CNS Lupus and Emotions

Lupus Treatment
12/28/2012 NSAIDs
    A Cautionary Tale

12/20/2012 NSAID/Cipro
     Interaction

12/10/2012 IL-6, Lupus and
    Tocilizumab: Cytokine Storm

12/8/2012 Medication Alert
12/5/2012 Rhupus
 
11/28/2012 A Gene For
     Autoimmunity?
11/24/2012 Infection and Lupus
11/14/2012 Zebras, not Horses


Archived Blogs

10/25/2012 Prednisone

        Equivalents

10/25/2012 Prednisone and

        
HPA Suppression
10/24  Lupus and Hair Loss

10/23 Lupus Panniculitis
10/21 Prednisone and
 
     Drug Interaction
10/20 Weight Gain
      and  Prednisone
10/18 Lupus, Fatigue
        and Muscle Weakness
  

Autism and Lupus 8/2012
Azathioprine
   9/2012   
Hospital Rankings U.K.
9/2012
Hospital Rankings U. S.                                                                               
Lupus Book 10/2012
Lupus Breakthrough 9/2012
Lupus Causes 9/2012
Lupus and Emotions 9/2012

Lupus and Epstein-Barr 8/201
Lupus and Gender 9/2012
Lupus Links
10/2012
Lupus Nephritis Update 10/2012
Lupus and Pesticides  9/2012  
Lupus and Prednisone 10/2012

Lupus and Vaccines
9/2012
Lupus and Vitamin D 9/2012
Methotrexate 9/2012
Mycophenolate 9/2012
Neutrophil Extracellular Traps
Periodontitis and Lupus 9/2012

Photosensitivity 8/2012
Plaquenil 9/2012
Plaquenil and Quinoric 9/2012
Rituximab 9/2012
Staph and Lupus 9/2012
Lupus Symptoms
What is Lupus?
10/2012
X Rays and Lupus 
9/2012

A. G. Moore


 
 



                         
 
Information provided on this site is for
  informational purposes  only; nothing on
  the site is meant to substitute for a doctor's
  advice. My articles do not suggest a course
  of treatment nor do they prescribe
  medical care. They are written to encourage
  patients to educate themselves and to have a
  productive dialogue with their doctors. No
  website mentioned on these  posts is either
  explicitly or implicitly endorsed.


















































































































































































The Skin and Lupus
By A. G. Moore 5/23/2013


V-sign Rash: Photosensitive Reaction
Photo by:
Elizabeth M. Dugan, Adam M. Huber, Frederick W. Miller, Lisa G. Rider
Public Domain on Wikimedia Commons

The skin is the largest organ, so it's not surprising that the skin is one place where lupus symptoms often appear. According to the Lupus Foundation, two thirds of people who have lupus will have some type of skin involvement. The Lupus Center at Johns Hopkins Hospital in Baltimore likewise describes the frequent incidence of skin problems in lupus patients.

Dr. Simon Meggitt, of the Royal Victory Infirmary in the UK, recommends that lupus patients with skin issues receive early and effective treatment. There is a tendency, the doctor believes, to dismiss skin issues.  However, this attitude underestimates "the far-reaching impact that a skin problem can have...".

While both the Lupus Foundation and Johns Hopkins suggest a dermatologist might be beat qualified to deal with this manifestation of lupus, Dr. Meggitt is more of the mind that one physician--a rheumatologist--oversee the care and the if necessary a dermatologist be on hand for consultation.

Just about everyone agrees that disruption in the skin in people with systemic disease may be a sign that lupus is acting up. That has been my experience; most of my skin issues have been with hives an rashes. Sometimes, when these appear to be of the type that I am used to, I wait to see if they'll clear up on their own or with the application of a very mild topical steroid. However, I never dismiss a rash as unimportant; I take it as a sign that trouble may be brewing. I pay attention to my body and my environment and try to figure out what might have caused the rash. Because whatever made the rash appear could bring on a more generalized flare.

Some of the ways in which lupus can affect the skin are:

  • Discoid lupus (chronic cutaneous lupus):  This form of lupus needs accurate diagnosis and prompt, effective treatment. Usually a doctor can diagnose discoid lupus without a biopsy; sometimes a doctor will call for a biopsy in order to be certain that what appears to be discoid lupus isn't in fact something else

    With discoid lupus, the best treatment begins with prevention. Stay away from UV, whether the source be natural (the sun) or artificial (ex., fluorescent lights). After this preventative measure is taken, the first medicines prescribe are generally topical steroids and anti-malarials. If these interventions don't work, doctors may move on to other, more powerful drugs. Sometimes discoid lupus and systemic lupus occur  together (about 20% of people who have systemic lupus also have discoid lupus). In about 5% of people who have discoid lupus but not systemic disease, systemic symptoms may later appear.

  • Cutaneous vasculitis: this symptom occurs when blood vessels under the skin become inflamed. Lesions that develop  can be serious. Cutaneous vasculitis requires the attention of a physician and careful monitoring.

  • Raynaud's phenomenon: this symptom occurs when blood vessels under the skin constrict. What is usually noticed as a change in the color of some extremity (like a hand, nose or ear). Raynaud's used to be one of the diagnostic criteria for systemic lupus, but since this phenomenon is so widespread in the general population, the ACR no longer includes this in its list of eleven lupus symptoms.

  • Alopecia: not only may hair loss occur as a result of having discoid lesions, but there is often a general thinning of the hair in people who have systemic lupus. "Lupus hair", as the characteristic appearance is sometimes called, looks thin and kind of ragged. Doctors who treat lupus may readily recognize this in a patient with active disease.

  • Ulcerations in the nose and mouth: these are quite common in lupus. As with other skin disruptions, these may signal that lupus is active.

There are other dermatological manifestations of lupus. The skin is not only our largest organ it is also our most conspicuous. It can tell us a lot about what is going on elsewhere in the body. It's probably a good idea to pay attention to the message it is conveying.



ANAs in the Lupus Puzzle

By A. G. Moore 5/14/2013
Immunofluorescence Pattern of Double Stranded DNA Antibodies
By Simon Caulton
On Wikimedia Commons


"What's going on?" I asked my doctor. It was 1992. The acute phase of a viral infection had subsided but several symptoms persisted. Joints in my hand were swollen; my blood pressure was elevated; my thighs and my feet ached.

The doctor examined me, asked questions and drew blood. He had likely formed an idea about what might be "going on"; the blood test would give him more clues. When the lab report came back, he learned something about the direction his inquiry should take: I had tested positive for antinuclear antibodies (ANAs). This result was a sign, not an answer. In order to get an answer, he told me, I needed to see a rheumatologist.

Back then, in 1992, I didn't know what a positive ANA lab report meant. Over time, though, I  learned a great deal about this laboratory test. For one thing, I discovered that the term antinuclear antibodies embraces a lot of different kinds of autoantibodies. Autoantibodies are at the heart of autoimmune disease.They are like rogue cells and attack the very organism that has given rise to them.

After a laboratory sends back a positive ANA finding, the doctor has a range of options: if the patient is asymptomatic (has no other signs of disease), the doctor is likely to file the lab report away and do nothing because positive ANA tests are found in about 5% of apparently healthy people.

Another option a doctor has, if the patient is symptomatic, is to draw blood and send the sample back to the lab for more definitive testing. In my case, the rheumatologist to whom I'd been referred looked for specific antinuclear antibodies. Lupus, at this point, was a distinct possibility. If my second set of lab tests came back positive for particular antibodies, such as anti-double stranded DNA or anti-Smith, then the doctor would have a clearer idea about what he was dealing with. These two antinuclear antiboidies are rarely found in a patient who does not have lupus.

Since that first day--more than 20 years ago--when a doctor told me my blood had tested positive for antinuclear antibodies, I've learned:

*  Wh
ile a positive ANA may indicate an autoimmune disease is present, a negative doesn't eliminate the possibility. Research shows that about 3% of the people who have lupus are "sero-negative"--that is, they get a negative ANA lab result. In a way, this is unfortunate, because it is so widely believed that ANA is a threshold test for lupus that precious time may be lost as doctors look elsewhere for an answer to a patient's complaints. Or, worse yet, doctors may stop looking for an answer altogether.

*  As lab results come in and a patient tests positive for specific kinds of antinuclear antibodies, doctors may discover exactly what's going on. Certain antinuclear antibodies are associated with specific symptoms: anti double stranded DNA, for example, appears often in lupus patients who have kidney involvement . Anti-Ro is found, often, in patients with cutaneous lupus (SCLE). Anti-Ro is also often present in the blood of patients who have both Sogren's Syndrome and systemic lupus.

*  ANAs are found not only in autoimmune diseases but also in certain cancers. Pelvic and breast cancers, for example, may trigger a positive ANA. And, it seems that ANAs are found in blood samples at increasing rates as people grow older--this finding is not associated with any evident disease process. In one study, 79% of people over the age of 100 had elevated levels of at least one kind of autoantibody.

The most interesting thing I learned about antinuclear antibodies is that, while they can be extremely helpful diagnostically, they are in many ways a mystery. Some researchers question whether they are merely bystanders in the disease process or whether they are themselves precipitators of disease. An article in the Journal of Rheumatology asks just that question.  It looks at the role of autoantibodies in the development of atherosclerosis and age-related immune system decline.

"What is going on?" That was the question with which I began this post. It's the question on the mind of every doctor when a worried patient arrives at the office. Doctors have many tools to help them find the answer to this question. The test for antinuclear antibodies is one of the tools. However, this test is never by itself an answer--it just allows doctors to ask more pointed questions.

I didn't know any of this in 1992 when I learned a laboratory detected antinuclear antibodies in my blood. If my understanding of this test had been better, I might have been more patient as the doctor searched for answers. I might not have been so unsettled by his reticence. How could he tell me what he did not know? He was on the path to discovery and we would both have to wait until information was more definitive.

Lupus is a perplexing disease to diagnose and challenging disease to treat. If the patient understands some of the difficulties, such as what an ANA test can and cannot reveal, then cooperation with the doctor and productive collaboration is more likely to take place.




Books by A. G. Moore

In Print and eBook Format:


A Lupus Handbook:
These Are the Faces of Lupus
 
   

  

Recommended by the Lupus Foundation of America


Available at
Amazon
Barnes and Noble
Sony
iTunes
Smashwords


A Mask for Every Face

(A Memoir)




Ernesto Learns to Love His
Nose

(For Children)







Exclusively in eBook Format: (free)


Prelude to a Vampire

Lupus Digest Basic Facts


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