You had so much hope for your rheumatoid arthritis (RA) medication. This was going to be the one that would control the disease, reduce your pain and fatigue, and allow you to get on with your life. Except it is becoming obvious that’s it is not “The One,” after all. The inflammation is still hanging around, your pain levels are messing with your life, and you wake up tired. What do you do?
Change the language
You have probably seen how rheumatology refers to a situation when a medication doesn’t work. The prevailing phrase is that you failed the medication. This can make you feel as if you didn’t try hard enough, or you might get really angry at your body. And this is profoundly unhealthy, causing an emotional upset that you don’t need add an already difficult time.
You didn’t fail. The medication failed. Changing the language used to describe this kind of situation puts the onus where it belongs: the medication. And it can help you feel a bit better about yourself.
Contact your rheumatologist
The recommended way of treating RA is early and aggressively by following a treat-to-target approach. If your rheumatologist is using this approach, you will likely have an appointment every three months or so to check your progress until the RA is controlled. If you don’t have an appointment for a while, call your rheumatologist’s office to make arrangements to come in. It’s important to keep the treatment momentum going, adjusting medication on a regular basis to achieve the goal of hopefully getting you into remission.
Active RA puts you at risk for joint damage and impact on other systems in your body. If you know what RA is, the impact it can have on your body, and the difference that treatment can make, you can have better conversations with your doctors about the goals for your future. Ultimately, this can help you make informed decisions about your treatment.
Finding a medication that controls your RA can be a bit of a trial and error journey. It is quite common to go through more than one medication before you find one that works for you. Other reasons for investigating options include that your medication stops working quite as well as it once did. You may also experience side effects that require you to try something else, although severe side effects tend to be rare.
We are lucky that we live in a time when there are quite a few medication options for RA. Talk to your doctor about what options are available and do some research yourself, as well. You may also wish to talk to people in the RA community about their experience. Remember that we all react differently to medication, so don’t get discouraged if you hear stories of people who have had bad side effects or were unable to find a medication that worked.
Deal with depression
Up to 40 percent of people who have RA experience depression and 30 percent of those have thought of suicide. There is some discussion that this may be a result of inflammation. Depression is also a fairly normal reaction to having active RA. High levels of pain, fatigue, and inflammation limit your ability to participate in your life and make you feel awful. Add to that potentially having problems finding a medication that works and you have a perfect storm guaranteed to make you depressed. If you’re having a hard time coping, please talk to your doctor. If you’re feeling suicidal, call a hotline. It can feel really scary to reach out, but as someone who has been in that space myself, I urge you to seek help.
Think outside the box
If you have tried all the medications on the market, and none of them have helped you achieve remission, all is not lost. Although remission is the ideal goal of treatment, lowered disease activity can be an acceptable compromise. You may be able to find a medication or combination of drugs that can keep your RA down to a dull roar. Sometimes, the goal of treatment is to keep you going until a medication that works for you becomes available.
If you’re willing to experiment a little, you may consider talking to your doctor about finding a clinical trial in which you can participate.When medications are investigated in studies, some groups of participants will receive the drug, others a placebo (a safe, but ineffective substance, such as a sugar pill). Unfortunately, there are no guarantees which group you will be in.
Hang on to hope
For most of my life, effective medication was just not available and I, as well as others of my generation, show signs of uncontrolled disease, such as deformities and various levels of disability. As Biologics were introduced, effective medication became a reality. Many more medications are in development. If you haven’t yet found a medication that works for you, it is a very likely that you will in the future.
See more helpful articles:
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.