Sunday, December 4, 2011

Lupus and the reality of remission

     When reading about lupus there is a lot of information, some is scary, some inaccurate, some hopeful; the main thing about lupus that I think is not written about in a completely accurate way  is that lupus is a disease of flares and remissions. Of course flares are very true, we all get them and they are very unpleasant to say the least.  The remission part of the statement is what I have a problem with.  Let me explain why. There are certain criteria that need to be met to be considered to be in a complete and true remission they are; you cannot be on any medication for lupus that means no prednisone, plaquenil, methotrexate or any other medication taken specifically for lupus.  Next, is that you cannot have symptoms, no irregular fatigue, joint pain, rashes etc.  Last, your bloods tests for inflammation need to be normal, no high esr rate or compliment levels, etc.  It takes all of these criteria to be considered to be in a true remission, and it is very hard to have all three.  I think a more accurate statement would be that lupus is a disease of flares and times when the disease is more quiet.  I have heard of some people going into a true remission but it is not most of us.  However, I think a partial remission is very possible, staying on medication, feeling much better, and having normal blood work is very possible.  Partial remission would be wonderful! I wish complete remission was achievable for everyone but unfortunately this is rare.  I have researched this for a couple of years and I am still trying to find the study that directly states a 6% true remission statistic for lupus.  I think most diseases are considered in a state of remission while kept in that state by medications and a less symptoms.  I have found  information providing this same theory of lupus and complete remissions.

Partial lupus remission, which is a period in which a person experiences relief from lupus symptoms, is considered common. Unfortunately, partial lupus remission is only temporary, and symptoms eventually return. Total remission, also called prolonged remission, occurs when a person experiences lupus inactivity that lasts for several years at a time or even for the rest of the patient's life. It is extremely rare for lupus patients to experience total remission. More commonly, lupus patients experience shorter periods of lupus remission followed by symptom flare-ups.
It is considered common and normal for a person with lupus to have short-term periods of remission. For example, a person with this condition could spend months feeling better and noticing significant improvement in his symptoms. Unfortunately, however, this period of feeling better doesn’t last indefinitely, and most people have flare-ups too. During times of flare-ups, a person’s symptoms often get worse, and he may feel sick for a significant amount of the time.
Lupus occurs because of the malfunction of a person’s immune system. It develops when the body fails to distinguish between a harmful foreign invader and its own tissues. In such a case, autoantibodies attack these healthy tissues and destroy them, causing the symptoms of lupus. Symptoms may vary but can include fatigue, fever, and weight loss as well as stiff joints, skin lesions, hair loss, and pain.

Prolonged Remission in Lupus Rare - Continued Observation Necessary 

December 18, 2003  Prolonged remission, that is, no evidence of disease activity or treatment for at least five consecutive years, is rare in patients with lupus, according to research presented at the American College of Rheumatology Annual Scientific Meeting in Orlando, Florida. A study of 704 patients with lupus was undertaken to determine the likelihood of prolonged remission in lupus and to assess what, if any, shared characteristics or features could be identified among patients in sustained remission.
Study participants were drawn from the University of Toronto Lupus Clinic Database of patients registered between 1970 and 1997, who were followed at the Clinic at least every 18 months. Of these, 12 patients achieved prolonged remission.
Investigators looked at the entire study population at the time of disease presentation to the Clinic, and there were no statistically significant differences between the 12 patients with prolonged remission and the rest of the group. The only statistically significant differences between the prolonged remission group and the remainder of the study population were that at any time leading up to the period of remission, those patients in prolonged remission were less likely to have been on corticosteroid or immunosuppressant therapy, to be anti dsDNA antibody positive (a blood test which indicates the presence of active lupus) and in addition, they had a lower level of disease activity over time.
Systemic lupus erythematosus, often referred to as SLE or lupus, is a chronic inflammatory disorder resulting from an abnormality of the immune system, which normally functions to protect the body against cancers and invading infections. In SLE, the immune system is over-active and produces too many abnormal antibodies that react with the patient’s own tissues. The exact cause of lupus is not known, but heredity, environment and hormonal changes may be involved.
Lupus affects 1.5 million Americans, and most of them are women. “Although we have made great strides in prolonging survival in patients with SLE, very few patients have a prolonged period of being disease and treatment free,” said Murray Urowitz, MD, Director, Centre for Prognosis Studies in the Rheumatic Diseases, Professor of Medicine, University of Toronto, Toronto Western Hospital, and an investigator in the study. “Thus we achieve disease suppression rather than disease remission. Therefore with current therapies continued vigilance for disease recurrence is necessary.”
What is remission?
A remission is a period of disease-free activity. Certain cases of lupus have become permanently inactive, or in total remission. Although total remission is rare, partial remission - a definite, but limited, period of inactive disease - is more common. 


  1. I would think this number would be higher. Based on the number of people with lupus who are/were undiagnosed for years. I got sick over the years, with rashes, fatigue, joint pains, I had the false positive syphilis and a allergic reaction to sulfa drugs. And thought nothing of it because it was mild and the doctors I saw said I was okay after my illness. Despite my telling the doctors, who would listen, that my mother had lupus. Now that I have been 'officially' diagnosed and read as much as I could about lupus, I recognized that I had flares all through my life. There were very long periods between my flares which I guess made it harder to diagnosed, so I would say that I was in and out of remission for the years that I was not diagnosed. Simply because my blood works never indicated lupus. Today my lupus is in controlled, not 'remission'.

    By the way my mother was in remission for about 20 years.

  2. I think that before we are diagnosed our symptoms are more vague. For instance, I was sick for years before being diagnosed as well and it was not as severe and symptoms would come and go, get worse or better. Then I could not walk and then, I got my diagnosis and have not ever been in a partial remission which is very common. I just think before I was diagnosed I was not in full blown lupus but undifferiated connective tissue disease. I am not saying this is with everyone and over the counter anti inflammatories worked well then too but now they cannot touch my pain.

    I am so happy that your mother was in remission for 20 years it gives us hope. I am not saying that it cannot happy but complete remission is not achievable for everyone. I wrote this because I was annoyed by hearing that people knew someone who knew someone in remission like lupus is easy to treat and is no big deal. I did not write this to take away hope or make people feel bad. I just want lupus to be taken seriously. Can you tell me what medications or treatment put your mom into a long term remission?

    Thank you so much for responding. Best wishes and gentle hugs. xo

  3. Here is evidence of the study if you scroll down to the remission question. This is for everyone not just my 2 cents. I pray that one day we will all be cured and there will be a vaccine!xo

  4. There are hundreds of different types of arthritis. Many people suffer from a form of arthritis which is in fact an auto-immune disease known as rheumatoid arthritis. This disease involves the body attacking its own healthy tissues in the joints. This is why joint protection techniques for rheumatic arthritis are important.
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