So, since we are clear that this is now an RA blog, I won’t feel guilty at all about blathering on about my RA. I finally got the go ahead to start Humira last month, and had my first shot two weeks ago. I guess I shouldn’t have been so excited about starting Humira, since that meant I had reached a point where I was considered to have moderate to severe disease, but lots can change in one year.
One year ago, I had just been diagnosed with RA. I was still reeling from the punch in the gut that news was and trying to wrap my brain around the toxins I was now going to have to ingest to stave off crippling deformities. Initially, I remember telling my sister that I would not take them. I had no intention of using Methotrexate or a biologic as I was still thinking I could eat clean and kick this thing, but like I said, lots of water goes under a bridge in a year. I quickly discovered through research that aggressive treatment is what is recommended and that you have to go through a process where insurance sort of gets to choose the order and introduction of treatments. I also learned that pain is a great motivator. The exhaustion was initially the worst aspect of this disease. I cannot quantify or adequately describe what it was like, but it is the kind of exhaustion where laying down to cry [or die] sounds like a great plan. The methotrexate doses had to go up and up until I maxed at 23 mg each week, injecting what looks like antifreeze into my thigh or belly. The side effect of this drug is also exhaustion, so by late last spring I was no longer even an approximation of my former self energy-wise. Adding in Plaquenil this fall gave me back my energy, thank heavens, but did not really help with the ever increasing pain and swelling. Each day I would awake to a new hellish joint pain or swelling– balls of feet, tendons in my arches, tendons in my heel, knees, wrists, thumb joints, knuckles, neck, jaw, you name it, I feel like I have dealt with it. The tendon issues in my wrists eventually incapacitated me by making it impossible to make a fist and grab or grasp things. These mornings, I could barely get dressed, I could not hold a cup with one hand, and my students had to take the caps off my sharpie markers. I got used to walking like an old woman every morning and asking people to help me open and close things. I dropped out of Zumba, stopped walking, running, hiking, and gained 15 pounds. My hair fell out in gobs until sometimes after a shower I would cry looking at my scalp showing through what used to be wonderfully thick hair. I had to become creative with haircuts, color, and styling products. “Luckily,” said my sylist, “you started out with lots and lots of hair.” Yeah. Now, I don’t really get obsessed with the hair any longer or the weight. I just want to be able to dress myself and walk and exercise again.
Humira arrived from a special pharmacy, in a special cooler, with a special co-pay plan [so I don’t have to pay the $25k a year that it actually costs], and a special coach who calls to remind me to inject and listens to my concerns. The first injection was unremarkable. I was pretty frightened of what side effects that I might have, but I really haven’t had any to speak of other than decreasing pain and swelling- hell yeah! The day after I had a headache, 3 days after I heard a wooshing sound in my ears that was like being underwater, but it did not last more than 20 minutes. I was on 10 mg of prednisone a day to get me through until the Humira kicked in, and within a few days I was down to 5mg, and this week down to 2.5 mg. I will go to 1.25 mg. next week and then let it go the week after if all goes as it has been. Tomorrow is injection #2 and I had breakthrough pain this morning, waking to swollen and sore wrists and thumbs. I guess that means it is working and for that I am truly grateful.
I have read that this TNF inhibitor can raise HbA1c levels and so I am trying to watch my sugar intake and increase my exercise as I can. It is true though, what they say about invisible diseases. No one really knows what I go through other than Bean. It’s like fighting this giant dragon every day but no one really knows that you are doing your job and fighting the dragon at the same time. I’m not sure what difference it would make if they did. I don’t guess I deserve a medal for it or anything, it would just be nice not to have to fight him. Right before the Humira I would feel sometimes like I wanted to quit fighting, but Humira has given me some new life/hope.
PS: If you’re on it, drop me a note. I’d love to hear your Humira story [or your biologic story] and if it made you gain or lose weight. Also, I would love to know what you do for the thinning hair.