By Ketki Gupta, MA, Director of Community Development at Health Union
Traditional approaches and complementary therapies work together.
Pain is one of the most prominent symptoms that people living with rheumatoid arthritis/rheumatoid disease (RA/RD) experience. It is like a loyal, constant companion for those living with this progressive autoimmune condition. And like any companion on a journey with us, we would like to know more about them and how they like to be treated.
Pain—the Unwanted Companion
In the Rheumatoid Arthritis In America (RAIA) 2016 survey conducted by Health Union, 90% of respondents currently experiencing symptoms reported having “painful joints;” it was the most prominent of symptoms reported. People with RA/RD reported experiencing pain on an ongoing basis with 46% of respondents experiencing it throughout the day. Pain—it is an omnipresent intruder in their lives.
Of the 1,600+ articles published to date on Health Union’s RheumatoidArthritis.net, about 200 articles are solely about pain and almost all the 1,600 articles have pain mentioned by the contributors. Our contributors are constantly trying to find ways to describe how they experience pain as a key part of their RA/RD, and they do so in a way that resonates with the community.
Here Is a Glimpse into What our Contributors Have to Say About Pain:
“You’d think after all these years I’d be used to my achy, tender fingers and feet. I’ve experienced them—literally—thousands, maybe even millions of times. But pain, somehow, always comes back brand new and reborn.”
“Sometimes there’s even a chart with a smiley-faced ‘one’ that progressively changes into a very unhappy ‘10.’ I hate that question. RA-related pain can vary not only from day-to-day but minute-to-minute, so how do you quantify it?”
“Whether it’s big or small, pain eats away at our ability to cope and carry on with our lives. I believe that we manage to ignore mild, and even moderate, pain some or even most of the time. We do it because we can’t put life on hold just because we hurt. If we keep on keeping on, we distract ourselves from our pain and force it down into our subconscious mind.”
In the RAIA 2016 survey, when asked to describe RA/RD in one word, “pain” and “painful” were most frequently used, as shown in this word cloud generated from these survey responses:
As you can see in the featured quotes (BLAKE: use graphic next to this), pain significantly impacts quality of life for people living with RA/RD. In RAIA, people described it as an agonizing condition, both physically and emotionally. Quite a few of the RheumatoidArthritis.net contributors describe how varying amounts of pain, from a nagging “level one” pain to intense pain in the midst of a flare, can also lead to fatigue.
Fatigue is a symptom frequently associated with pain, which also adds to the invisible nature of the disease. A lot of people living with RA/RD also deal with insensitive comments from people about their pain, with a commonly reported message being “just deal with it.”
But as has been recently discovered, pain is not just an invisible symptom of RA/RD, but also points to disease activity. A recent study shows low pressure pain thresholds (a measure of pain sensitization) are associated with higher disease activity and more tender joints in people living with RA/RD.
Getting to Treatment
With such a profound impact on quality of life and far-reaching implications, it is no surprise that treatment for RA/RD places a heavy focus on pain relief. In fact, our RAIA 2016 survey reveals that pain is not only a significant symptom but also a key factor in determining treatment satisfaction.
RAIA data shows that more than two-thirds of respondents started a prescription medication within a month after their diagnosis. Drug therapy, particularly disease-modifying anti-rheumatic drug therapy (DMARD), is the only treatment modality that shows clear evidence of efficacy in slowing or preventing joint damage. Thus, DMARD as a category is widely used by those living with RA/RD, while prescription non-steroidal anti-inflammatory drugs (NSAIDs) and muscle relaxants had higher abandonment rates. The American College of Rheumatology (ACR) recommends starting RA/RD treatment with DMARD.
According to the ACR, doctors typically employ a multi-pronged approach for RA/RD treatments, consisting of a DMARD agent in conjunction with NSAIDs, and/or low dose corticosteroids to reduce swelling and pain. RAIA 2016 found that DMARD and over-the-counter NSAIDs were most commonly used by people with RA/RD. There are traditional or “older” DMARDs like methotrexate, leflunomide, sulfasalazine, and hydroxychloroquine, which may be what is used in milder forms of RA/RD.
For moderate to severe RA/RD, these older DMARDs are typically used with biologic agent DMARDs like Humira or Enbrel. The newest forms of DMARD currently used as RA/RD treatment are Janus kinase (JAK) inhibitors, which target the Janus kinase signaling pathway of the immune system.
The RheumatoidArthritis.net community largely understands the importance of DMARD in slowing disease progression and, for some, getting their RA/RD into remission. People living with RA/RD express that there is a certain “lead time” when it comes to achieving therapeutic efficacy with these medications, which can be frustrating for people needing more immediate relief of severe symptoms like pain.
Currently, one of the biggest hurdles in acquiring these treatments, especially biologic treatments, is the high cost associated with these medications. This itself is sometimes a source of frustration people have with these medications. Therefore, the recent FDA approvals of biosimilars of biologic drugs has led to much excitement for RA/RD patients as it could mean significantly lower costs for these biosimilars.
The advent of biosimilars in the treatment landscape for RA/RD means that people living with the disease now have even more treatment options. This also points to the ongoing scientific study, research, and development in the realm of RA/RD treatment—a thought that’s very exciting to the very engaged RA/RD community!
Complementary and Alternative Approaches
Complementary and alternative medicine plays a secondary role in RA/RD treatment. The active and highly engaged RA/RD community is always looking for treatments and therapies that might help them attain some relief. Nearly all of RAIA respondents (99%) reported having used at least one alternative therapy to treat RA/RD and its symptoms in their treatment journey, and 95% acknowledge currently using these adjuncts, with vitamins, supplements, and exercise being the most used alternative therapies.
While people living with RA/RD do actively search for alternative therapies, they are largely aware that only drug therapy will help slow disease progression and potentially lead to remission.
Diet can also play a central role in the lifestyle changes and alternative therapies that people with RA/RD pursue in an effort to create a favorable impact on their symptoms. RAIA 2016 data shows that about 80% of respondents reported having changed their eating habits or utilized diet to try to manage their condition.
At RheumatoidArthritis.net we see the RA/RD community believes in leaving no stone unturned when seeking relief from symptoms like pain. At the same time, the community is acutely aware of the limitations of these alternative therapies and remedies in treating RA/RD and its range of symptoms.
In spite of the high number of people using alternative therapies, members of the RA/RD community say unsolicited advice about altering their diet, exercising more, etc. from those not living with this condition is a point of frustration. For example, a recent commenter on a RheumatoidArthritis.net post stated, “If it were only my diet causing me RA pain and symptoms, I would’ve changed it already and found relief.”
So while these alternative therapies do help in “making it a little better” our RA/RD community is aware that they are not the be-all and end-all solution for their condition.
Overall, the RA/RD community members try many things to seek relief from pain and other symptoms in order to make their day-to-day lives better. In addition to treatments and lifestyle changes, the majority of the RA/RD community also seeks support from online communities and support groups. In a recent poll on RheumatoidArthritis.net, 80% of respondents reported that being part of an online community has made their journey with RA/RD better. And when all is said and done, striving for an improved treatment journey is what we all want!
About Ketki Gupte, MA
Ketki Gupte, MA, is Director of Community Development at Health Union, where she employs her education in marketing, communications, and linguistics along with her experience in health care communication to understand and cater to patient needs. During her time analyzing doctor-patient communication, Ketki discovered the power of empathy as key to effective communication with patients and also a means to engage and empower them. In her work, she strives to nurture empathetic communities, which will eventually help patients and caregivers take charge of the condition, improve their quality of life, and find support while doing so. At Health Union, Ketki serves as the content lead for RheumatoidArthritis.net and Asthma.net.