Yesterday, we discussed the frequently-asked question of the consequences of not treating RA. People also sometimes say they just can’t take Rheumatoid Arthritis treatment any longer because “it’s even worse than the disease.” Why do patients say that and what’s a reasonable response?
Let’s be clear about terms:
- Treatment: medicine used to improve disease activity and symptoms
- Benefits: improvement in disease symptoms due to treatment
- Side effects: unpleasant consequences brought about by a treatment
- Symptoms: the noticeable effects of the disease itself
For these patients, medicine side effects outweigh benefits.
How can this happen? Let’s look at some logical alternatives.
The treatment benefits seem insignificant in comparison to side effects in these four circumstances:
- The symptoms are not very severe, so the side effects seem very annoying and outweigh perceived benefits.
- The symptoms are severe, but the benefits are negligible, so the side effects are too high a price to pay.
- The symptoms are severe, with good treatment benefits, but the side effects are extremely severe.
- The symptoms are periodic (flares), so treatment benefits are uncertain, making regular side effects more obviously bothersome than symptoms.
What to offer these patients?
It would be important to determine which scenario a patient experiences when they call treatment “worse than the disease.” The patient can probably tell you.
- Listen: Do not dismiss their dilemma.
- Inform: If there is evidence of treatment benefit, let the patient see it for herself.
- Change treatment: Adjust a dose or change the medication combination to increase effectiveness or lessen side effects.
- Treat side effects: Find solutions or treatments to relieve side effects.
I’ll bet you have more ideas. Instead of just saying patients are wrong, let’s tell caregivers and researchers why treatment can seem worse than the RA to some patients. What do you think?
Postblog: With unrelenting RA affecting every joint and daily fevers, side effects would have to be horrific for a patient like me to say that RA treatment is worse than the RA. But, remember that benefits of treatment are undefined in the one-third of patients who are non-responders. Patients like this continue to take treatments out of optimism more than evidence, presuming that there is unseen benefit to treatment in spite of minimal improvement. As discussed yesterday, the consequences of not treating RA are obviously unfavorable.