Lupus and RA: A Frustrating Combination
May is both lupus and arthritis awareness month, which is convenient for me, since I have both illnesses.
I was diagnosed with RA first, and a few months later, the diagnosis was changed to both RA and lupus. For me, the diagnosis of just RA did not speak to a significant number of my symptoms. While RA did describe my joint pain/lack of mobility and morning stiffness, it didn’t speak to chronic fever and flu-like symptoms.
For those who don’t know, lupus is characterized by fatigue, joint pain, fever, rash, oral and nasal ulcers, and a variety of others symptoms; those just mentioned are the most common.
The easiest way to describe lupus is that you feel like you have the flu all the time. For me, lupus in general makes me feel nauseous, dizzy, headache-y, and generally unwell.
Rheumatoid arthritis is characterized by tender, warm, and swollen joints, morning stiffness that can last for several hours, nodules, synovitis (fluid buildup around the joints), and fatigue. Again, these are the most common symptoms of RA.
There are some similarities to both illnesses. Both are autoimmune in nature, and are an immune response to the body mistaking things that are supposed to be there as foreign invaders. These illnesses are exacerbated by stress, and they have periods of intense disease activity, or flares.
There are also important differences. While RA affects the joints, lupus affects the organs and tissues. So if you have both of these diseases, like I do, it basically means that your entire body is affected.
According to one article, "One of the major clinical features differentiating RA and SLE is the nature of the polyarthritis. In the two diseases it is characterized by symmetrical involvement of the small and medium joints. Typically in RA there is a progressive deforming arthritis associated with erosive radiological changes, whereas in SLE the arthritis is usually non-erosive and non-deforming" (Brand, et al. 1992: 175).
Some people refer to those who have symptoms of both lupus and arthritis as having "overlap syndrome". I despise this term. To me, it is simply a term that allows doctors to not actually provide a specific diagnosis.
So when I tell people about my illnesses I say that I have both lupus and RA, because I do.
Some have even come up with the creative and quirky term, "Rhupus" (Panush, et al. 1988).
(Sounds to me like what Scooby-Doo would say, trying to pronounce lupus).
"Rhupus" is defined as being seen in a patient that has a ‘mixture of signs and symptoms’ of both lupus and rheumatoid arthritis (Panush, et al. 1988).
Researchers emphasize that lupus and rheumatoid arthritis are two different diseases - which may include similar genetic components - but the incident of both diseases in the same person is not unheard of (Brand 1992; Cohen and Webb 1987). In fact, the incidence of having both diseases may be more common than previous research has suggested (Cohen and Webb 1987).
Although others have disputed this, saying, "We conclude that rhupus is not common and that it occurred less frequently than would be expected, based on the prevalence of RA and SLE in our patient population (Panush, et al. 1988: 1636).
The article goes on to say, however, that "Nevertheless, patients with rhupus were clinically distinct from patients with either SLE or RA. Appreciation of these patients with rhupus is important since their therapy and outcome differ from those having RA or SLE alone" (Panush, et al. 1988: 1636).
This is very important for many reasons. First, whether or not researchers acknowledge the frequency of "rhupus," they at least acknowledge that it is a potential disease state that should be treated as such. Second, given this, it may mean that the way such patients are treated needs to change to acknowledge the treatment of both diseases at the same time.
Even today, I feel like I am deemed as a "complicated" or "interesting" patient, but the uniqueness of treating a patient with both lupus and RA is not fully understood. For me, personally, when I go to the doctor, I often cannot tell which disease is flaring.
When I was on Humira last summer, my rheumatologist and I knew that my being on an Anti-TNF drug could cause a "lupus-like syndrome," which I didn’t need, since I already have lupus. Unfortunately, as it happened, the Humira did cause my lupus to flare severely, and I ultimately had to go off of it. I am also unable to try other Anti-TNF drugs because of this.
This means that while RA is tricky enough to treat on its own, I have the added complication of having lupus. And as suggested above about the Humira, some of the drugs that are used to treat RA are incompatible with lupus.
Like many others with autoimmune diseases, along with lupus and RA, I have also showed symptoms of Raynaud’s Phenomenon and Sjogren’s Syndrome. But the more you add on, along with RA, the more complicating and frustrating it gets.
Brand, Caroline A., Merrill J. Rowley, Brian D. Tait, Kenneth D. Muirden, and Senga F. Whittingham. 1992. "Coexistent Rheumatoid Arthritis and Systemic Lupus Erythematosus: Clinical, Serological, and Phenotypic Features." Annals of the Rheumatic Diseases 51: 173-176.
Cohen, Michael G., and John Webb. 1987. "Concurrence of Rheumatoid Arthritis and Systemic Lupus Erythematosus: Report of 11 Cases." Annals of the Rheumatic Diseases 46: 853-858.
Panush, Richard S., N. Lawrence Edwards, Selden Longley, and Ella Webster. 1988. "‘Rhupus’ Syndrome." Arch Intern Med 148 (7): 1633-1666.
Leslie wrote for HealthCentral as a patient expert for Rheumatoid Arthritis (RA).