Isle Royale coastline, Michigan, Lake Superior

AT THE WATER’S EDGE:

LIVING LIFE AND LEARNING ALL I CAN ALONG THE WAY

Three Months of Humira

My next appointment to see my rheumatologist is on Tuesday.  We’re going to have to evaluate how well Humira is working to try to determine whether to continue the treatment course I’m on or to change it up some how.  If you’ve been following my Humira story, you’ll know it’s been kind of hard for me to determine how well it’s working.  At this point, three months into my new treatment, I feel like I am pretty stable and I know what to expect most days.  That’s good.  The bad thing is that I have stabilized at a higher level of disease activity than I had even a year ago.  



When I started Humira in December, I was still in a flare that had started this past fall, but I felt that it was getting slightly better.  With my sed rate still high and joint space narrowing in my wrists, however, my doctor felt it was time to try something new.  As I transitioned from Enbrel to bi-weekly Humira, I continued to have variable symptoms each day – never really knowing what I’d wake up to.  My wrists were the worst, and would oftentimes wake me up at night because they were painful.  Some days they would radiate pain even when I just kept them still; other days they would just be stiff, sore and weak, only hurting if I exerted too much weight or pressure.  My elbows were often sore, and my ankles began to hurt after periods of inactivity.


After one month of that, I switched to weekly injections of Humira – doubling my dose.  After that point, I began to have more good days, but still felt that my symptoms were somewhat unpredictable.  Once February rolled around, I began to feel more stable, and realized that as long as I took my Naproxen twice a day, I could avoid any serious pain in my wrists and other joints.  Over the past couple weeks I have seen improvement in my strength range of motion on my right wrist, although my left is often still inflexible and weak.  I have also been feeling better when I get out of bed—actually being able to walk rather than stumble to the shower.  I still have sore ankles at times, and my left knee has been getting stiff and sore with inactivity again.  My fingers are also often swollen and sometimes tender – which is normal for me, as historically my hands have taken the brunt of my RAD attacks.


My best guess: I think that Humira probably works about as well as Enbrel did.  I am taking the Naproxen more regularly now, and that has helped me feel more stable.  The flare is likely to wax and wane on its own a bit, and will likely shift around as RAD likes to do.  I am comfortable with where I’m at, because it’s not too limiting at this point, nor am I typically in pain throughout the day or night.  However, the concern remains in my wrists and whether or not any permanent damage is occurring.


I’m going to try to bring my husband, Tom, to my appointment on Tuesday, so if we need to discuss treatment options, he’s there to help me make any important decisions.  I am not sure how my doctor will take my progress these past three months, but we will find out soon!

One response to “Three Months of Humira”

  1. It's a bit of sucky spot to be in still, even though it could be worse, eh? I hate that NSAIDs can make such a big difference, since they don't change the course of the disease and we'd rather not be on them long term either due to their own side effects – but yes, getting on the right NSAID for you, and then making sure to take it always and on schedule does make a big difference in pain levels. I added Plaquenil a couple years ago, and find that if I miss a dose (usually my night dose) it makes a big difference too.I am in same spot as you trying to determine next med step if any. Just not with a biological. Trying to decide if potential side effects of Arava are worth adding to the mtx/hcq combo right now, as I know I've got some continuing disease activity, just not blaring disease activity. I was on it in past and know it raises my already bad cholesterol and worry about it's potential skin cancer effect, so need to be researching that more. I just wasn't on it with mtx back then, but rather with Immuran, so don't know if that would make a difference. Chelsea

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