Last updated: September 2023
"Buckle up, it’s going to be a bumpy ride!" Do you ever feel that way? Sometimes I feel like my ride is a never-ending roller coaster with twists, turns, and loop-de-loops. I love roller coasters, but sometimes I want to get off.
The 10 steps I go through with RA treatment re-evaluation
When we get to a place where it’s obvious that something’s got to change, what do we do? I would like to say that I approach change with a positive and informed mindset. (Anybody else laughing hysterically?!)
I seem to go through steps on my way to the positive and informed mindset.
Step 1: I refuse to believe that I have to change my treatment plan again! Surely, this will get better soon!
Step 2: Why do I have so much pain? Look at my fingers, they are crooked!
Step 3: All I can do is push through work and go home and rest and rest and rest...
Step 4: I cannot continue like this. I give myself a reality/pity party.
Step 5: I mourn the failure of my treatment plan. (This can go on for several days.)
Step 6: I finally tell my rheumatologist that my treatment is not working.
Step 7: We wade through all the medications I’ve tried previously and then realize what little is left.
Step 8: We discuss all the pros and cons and side effects of the new medication.
Step 9: I get my co-pay assistance card and medication while waiting for insurance approval.
Step 10: I read all the available information and pray for good results.
Relying on steroid treatment in the interim
That’s where the low-dose steroids come in. I’ve been on 5 mg of prednisone for 10 months now because nothing was working.
My new medication is 10 weeks in and expected to fully kick in at 6 months. After a discussion with my rheumatologist, I am staying on prednisone for "as long as I need it."
Does any of this sound familiar? Many of us go through this. Some of you are probably much better at moving through the steps, even skipping some. The rest of you could be thinking, "Oh, good, I am not alone!"
This may be my new normal
I never wanted to be on daily steroids. Usually, an injection twice a year would take care of it. My initial thought was I only needed the prednisone for a "little while" to get over the hump.
As soon as I could, I tried to taper off. HUGE mistake! I tried to do it too quickly. A miserable 4 weeks later, I restarted the full dose. Knowing that the dosage was low, I told myself it was okay for now. Now I realize that this may be my new normal.
Getting through the steps again is exhausting, but necessary. I know that many of you have traveled this road more than once. Please share your steps with us.
Have you struggled to afford your RA medications?