I see myself as an RA Dancer. Sometimes RA leads. Sometimes I lead. I am always trying to find the right balance.
Finding the right medication combo or “cocktail” is a challenge for most of us. We usually start out with anti-inflammatory drugs such as Ibuprofen, Aleve, or Celebrex. Then we add Plaquenil or Methotrexate to the mix and hope that helps. When that isn't working, our doctors may change our DMARD from Arava or something else.
All drugs have benefits and risks. I know several people who cannot take MTX because it raises their liver enzymes too much or it causes migraines. If you find yourself in that situation, please talk to your doctor about an alternative. I have a friend who had a migraine headache for three months. She finally switched from MTX to Arava and she is doing well on her new med. She should not have had to suffer so long with paralyzing migraines.
I started my medication journey with Celebrex, Methotrexate and Tramadol. MTX raised my liver enzymes for a short time, but they went back down to normal levels after my body had a chance to adjust. My RD says I have an “irritable” liver. It doesn't seem to like any new drugs, but after a week or so, it settles down and acquiesces.
When I started the biologic Humira, my liver enzymes went up slightly, but they were normal by the next blood test. This has become part of the drill, and so far, so good. Humira is a good drug for some people, but none of us react to the same drug in the same way.
It took three months of Humira injections before I saw any improvement in my RA. The first thing I noticed was a slight reduction in the fatigue factor. Ah, the fatigue factor! Sometimes I think the FF is worse than the pain, so any relief in FF is a welcome change.
The next improvement came in the form of reduced inflammation markers in my blood. Another welcome change! I stayed on Humira for nine months. My FF improved, my blood tests improved, but I still didn't feel well, and I still had some stunning flares. You know what I am talking about. The kind of flares that make it difficult to brush your teeth, comb your hair, live your life.
After nine months of being on Humira, my RD decided it was time to move on. We probably should have moved on sooner, but I kept hoping Humira would be my magic bullet. Finally, Dr M looked at me and said, “I don't like what I see. You have a lot of swelling. We are going to try Orencia.” At that point, I was ready to try something new. The inflammation markers in my blood were up again, my FF was at an all time high, and I was struggling to get through my days.
I have to admit, I was a bit afraid of Orencia. I'm not really sure why. Maybe it was because I had to go to the infusion center for a “loading dose”. Maybe I was hesitant because of the weekly injections with a syringe. I had only used the Humira “pens” and was somewhat unsure of how I would handle a pre-filled syringe. After a week of indecision, I made the appointment for my infusion. My infusion date was Friday, the 13th of July. The scheduler asked if that date was an okay day for me. I laughed and said it was going to be a lucky day for me, and any Friday is a good day.
I have to say my experience at the infusion center of the hospital was a good one. I had a fantastic nurse. She had a bit of trouble finding a vein for the IV because my elbows are swollen and the tendons and muscles are fibrous from years of inflammation. She was undaunted. She found a vein on the underside of my forearm, and I felt only a small pinch when she inserted the needle.
The infusion only took thirty minutes. My nurse, Letha, and I chatted the time away. She didn't realize that Orencia could be self-injected, and so I explained to her I would be injecting the medication weekly. I left he infusion center very pleased, and full of hope.
The next day, I injected myself with a pre-filled syringe, and all of my fears were put to rest. The needle is so small, I barely feel it going in. The best part is this: It does NOT sting like Humira. I still cringe when I start to inject Orencia, but that is a left-over reflex from months of injecting Humira. This is a great upside to Orencia.
The most amazing thing I have noticed since starting Orencia is that for a few days after my injection, my swelling is much, much better. This benefit seems to wear off before my next injection is due, but I am hoping that the swelling will stay down between injection days eventually.
I am going to share a picture of my experience at the infusion center. I don't look so well, because I wasn't feeling well. My face is puffy and my arms are swollen, but I know you all can relate to that. I want you to know that after only a few weeks on Orencia, I am feeling and looking much better. I am sharing this story to help those who may have had some of the same fears I had about changing meds and the whole infusion experience.
When I was having my infusion and chatting away with my nurse, I visualized little RA trolls floating around in my bloodstream and the Super Hero Orencia going in there and knocking the trolls out with a huge Fred Flintstone type bat. Whatever works, right? Attitude is everything.
I have high hopes for Orencia. I hope it is the medication for me. If not, I will have to face up to the fact that it is time to move on, to try something else. I hope my experience will help ease any anxiety you may feel if and when you need to change your medications. As for me, I am asking Orencia for this dance, and hoping for a long, happy relationship
Published On: July 30, 2012