I heard a click then felt a sharp prick into my leg and the stinging rush of the medicine: my first dose of Enbrel.
My husband had the honor to give the first injection, which was good because I was already too nervous without the pressure of doing it wrong and misfiring. We went to my rheumatologist’s office to meet with the wonderful nurse who trained us on the injection. The day before we had watched the training video on the website, which helped to prepare us for the process.
The nurse gave us a kit including a travel case, alcohol wipes and sharps container. She picked up the injection we had brought with us and showed us how the mechanism worked. And with some encouraging words, I had my first dose of Enbrel.
When the biologics first appeared as a promising treatment for rheumatoid arthritis, I was already well over 20 years into my disease. At the time, I was pretty much in remission with only a flickering level of disease activity. We didn’t feel there was a reason to change treatments because I was already stable.
When my RA regained aggressiveness more than five years ago we tried methotrexate because it was one of the drugs I had never tried before. Periodically we considered trying a biologic—would it work better for me and quiet the RA? Would it make my liver happier, which was on the edge due to the methotrexate?
But there was a lingering worry in my left knee, which for many years was suspiciously warm to the touch and swollen. Then the concern inflamed to urgency as my pain increased. We discovered my old knee replacement was infected, launching me into a long process of several surgeries, antibiotic treatment and physical therapy.
I was very fortunate we had not tried the Enbrel then because my knee infection could have spread quickly with disastrous results. One of the top warnings on the drug is the risk of infection. Starting the drug with an already existing infection would have been very dangerous.
This past January I celebrated one year with my new knee and improved health, however my inflammation markers were on the rise along with my liver function tests. Now that I was cleared of the infection, feeling good and recovered from the surgeries, should we try a biologic and see if my RA would respond?
I researched the side effects, the largest of which is a suppressed immune system and the related risks, and considered my options. My current treatments were not silencing the disease and I wouldn’t be able to continue the methotrexate much longer due to the liver effects. For many people with rheumatoid arthritis and other autoimmune diseases, biologics have been miraculous. They stopped the disease in its tracks, minimizing long term damage and helping people to lessen their pain.
But would the drug have any effect on someone like me who has had the disease for a long time and lives with severe damage? Would it make a difference?
I decided that I wouldn’t know if I didn’t try. Keeping in mind the risks, I’d take it a week at a time.
Patience is a virtue that I don’t always possess. When I went on methotrexate it took four weeks for me to start feeling a change in my RA. We didn’t know how long it would be for the Enbrel. My doctor said perhaps 2-3 weeks before I would feel a change, but research we found online indicated it could be several months.
It would be wonderful to be in less pain, to feel less stiff, to slow or stop the activity of my RA. Fingers crossed, but I’m trying not to have any expectations and just keep an open mind—day by day and week by week.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?