Living with Both Lupus and RA: Symptoms and Medication Options
When I was diagnosed with both lupus and RA, I felt like I was the only person in the world who had both diseases. In 2008, when I started blogging, there weren’t very many people I could find that had been diagnosed with both. Now, it’s different. I know that being diagnosed with both lupus and RA is more common than I originally thought, or at least, people are talking about it more now than they were before.
For me, the RA diagnosis came slightly before the diagnosis of lupus – just a few months. When I was diagnosed with RA and was reading about the disease, it described some of my symptoms, but not all of them. When the lupus diagnosis was added, I felt confident that I was dealing with both diseases.
It’s interesting because my rheumatologist in Michigan treated me like my RA was the bigger problem, and my rheumatologist in New York treats me like lupus is the bigger problem. At first this bothered me, but in the end, it doesn’t really matter. I have symptoms that fit the diagnostic criteria for both diseases, and as long as the treatments I’m on seem to be working, I don’t really care if one is worse than the other. In my opinion, sometimes it’s even hard for me to know which is which.
My general symptoms include joint pain, stiffness, swelling, a feeling of being unwell or like I am constantly getting sick, feeling hungover and hit by a truck when I haven’t been drinking (and wasn’t actually hit by a truck), brain fog, and fatigue. I’m sure I’m missing some symptoms here, but these are the ones that I experience on a regular basis. I associate the joint pain, stiffness, and swelling with RA, and the rest of the symptoms with lupus. Lupus can cause joint pain as RA does, but usually does not cause swelling or permanent joint damage. The people I know who have lupus that have had joint replacements, have needed that as a result of corticosteroid use and not as a result of the disease itself.
Both diseases involve systemic problems. While it is said that RA mainly effects the joints and lupus effects the organs, this distinction isn’t necessarily helpful, as there are plenty of people with RA who have organ involvement.
For me, the most difficult part of having these two illnesses is treatment. The most common types of medications used to treat lupus are non-steroidal anti-inflammatory drugs (NSAIDs), antimalarial drugs (Hydroxychloroquine/Plaquenil), corticosteroids (Prednisone), and immunosuppressants (Cellcept, Imuran, Methotrexate); whereas the most common types of medications used to treat RA are NSAIDs, corticosteroids, disease-modifying anti-rheumatic drugs (DMARDs; Hydroxychloroquine, Methotrexate), and biologics (Enbrel, Humira, etc.).
While some of the treatments are the same across the two diseases, the main difference is between biologics and other types of immunosuppressants. I have been on several immunosuppressants, including Cellcept, Imuran, and Tacrolimus. These medications were originally created for patients who have had organ transplants, but they have found their way into the mainstream of lupus treatments. The idea is that, in lupus, your body is basically rejecting its own organs and tissues, and therefore, by tamping down the immune system, these medications can work the same way for lupus patients that they do in preventing patients from rejecting organs after transplant.
My treatment with biologics has been minimal thus far, unlike many other RA patients. I was on Humira, which didn’t work that well for my RA, but then caused me to have a massive lupus flare and I was bedbound for two weeks. This means that all of the anti-TNF drugs are off the table for me, as my doctors think that any similar medication would cause my body to react the same way.
My rheumatologist in Michigan wanted me to try Rituxan, but I was very skeptical because of the incidence of progressive multifocal leukoencephalopathy (PML), a deadly brain disease, which is more common in people with lupus. I decided that for me, that would be a drug of last resort. My experience being on Humira and considering Rituxan make me hesitant to try any of the other drugs in this class.
This frustrates me in that I know many people with RA who cycle through every drug available. And I can’t do that. Obviously, I don’t want to have a massive lupus flare the way I did when I was on Humira. But it would also be nice to be able to try any and all treatment options available related to my illnesses. And because I have both illnesses, this is not an option for me.
No matter how you look at this, lupus and RA are different diseases, with different symptoms, and different medications. There is a lot of overlap, but not everyone who has lupus has RA, and not everyone who has RA has lupus. Those of us with have both acutely know the difficulties that come dealing with multiple diseases.
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