My RA, My Journey, My Call
Fun Fact: I’m a nerd.
You may already know this about me but, in case you didn’t, there you go. And, when the Editorial team at RheumatoidArthritis.net asked me to write about some interesting points from the 8th Annual Rheumatoid Arthritis In America survey, I jumped at the chance.
Data on biologic and JAK inhibitor use
I love looking at research, then asking questions about it. It’s a good thing I’m a science major, right? But, before we dive into the topic at hand, let's look at the data. With biologics and JAK inhibitors, it was found that:
- a little more than half (51 percent) of people (n=1022) did not try the medication type because their doctor has never recommended it
- 31 percent were concerned about potential side effects
- 28 percent were managing with their current treatment plan
- 17 percent found that their symptoms were not bad enough to warrant trying a biologic or JAK inhibitor
- 13 percent can't afford the medications and for 7 percent, insurance won't cover it
Let’s be real, navigating medications and doctors and insurance is extremely difficult. Unless we are “up on the current events” of rheumatology (I don’t really know many people outside of rheumatologists who are, to be perfectly honest), it’s hard to keep track of everything happening. I asked my doctor once ‘What’s the haps’ and he replied, “We would need all day!”
What contributes to trying an RA medication?
First of, I don’t get mad at my doctor if s/he never recommended a medication. They have to play the insurance game. Most insurance companies won’t cover biologics until you’ve tried some other “less expensive” medications like NSAIDs and DMARDs. I know, personally, my insurance wouldn’t cover the biologics until I had at least tried methotrexate.
Valid concerns about side effects
Let’s talk about side effects. Concerns are very much valid. These medications have an amazing list of potential side effects. It amazes me that the medication is even effective when it causes so many issues.
However, not everyone experiences side effects. Remember, side effects are listed because of legal issues, not because they are super common. From experience, I have not experienced side effects while taking some of these heavy-duty NSAIDS and DMARDS. But, on the flip side, I have experienced severe side effects from generally tame medications. Unfortunately, you can only know until you try. But, if you do get side effects, talk to your doctor immediately. S/he may have suggestions to combat them!
Being an empowered rheumatoid arthritis patient
Now, the fun part of the article: patient empowerment. It’s important. We know our bodies best; we know what works and what doesn’t. Remember what I said above: doctors have to go by a certain formula when prescribing meds.
Ask about questions about RA medications
If you have a question about a medication, ask it! Have a concern? Tell them about it. We are the ones taking the medications, we deal with the side effects. We get to ask those questions, we get to voice our concerns.
Can I be honest? The next number (28 percent were ‘managing’ with their current treatment plans) concerned me. Let me preface this by saying: I don’t know how people define ‘manage’. When I see the word, I think ‘just okay’; not horrible, but not great, either. I see it as someone’s disease management is manageable with occasional symptoms, but still able to live a generally normal life. It could be better, right?
Don't be afraid to bring up your concerns
If you have read any of my articles, you can tell I am vocal and I have no issues bringing up issues with my doctors. I am lucky I have an amazing doctor. To those of you that don’t feel like your doctor takes the time for you, or listen, or isn't the least bit empathetic, I see you and I still suggest you write down your questions and concerns and bring them up at the next visit. At the end of the day, you are making that appointment, you are paying for that appointment and your doctor - regardless of how they practice medicine - sets that time aside to meet with patients.
Talk about financial assistance
And YAY! If you don’t need a biologic or JAK inhibitor, some people don’t. There are some risks in introducing an immunosuppressant of that caliber to your system (a very expensive immunosuppressant, at that).
This feeds into the last data point. If your doctor is interested in trying a biologic and money is an issue, you are NOT alone. I don’t know anyone who will willingly say, “Here, have $4000!” But, once again, speak up. Ask your doctor (or the nurses) about co-payment assistance plans or other financial aid. Most of these super-expensive medications provide help.
Do you see a trend in this article? Voice. Talk. Say Something. Speaking up is hard. We all have our reasons for not wanting to do so, but it is important. It’s your body; it is your life. Your doctor is there to help you, but they don’t live with what you do. You can do it. After all, if I can, you definitely can as well!
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?