Monday, February 9, 2009

N=1 - Humira take 2

Went to see my wonderful rheumatologist today. I really am beginning to think this woman walks on water. Of course, it doesn't take much for a doc to get my gratitude - just the basics. It's as simple as: Listen. Take me seriously. Don't hurt me. Don't make me wait for an hour to see you for 5 minutes.

Anyway, I've been on Humira now for 14 weeks. As I mentioned in an earlier post, my rheumatologist had great hopes that Humira would make me able to do "whatever I wanted to do, whenever I wanted to". Well.... 14 weeks later, and I'm estimating I'm only about 50% there. My knees and thumb are much better, and I'm not so stiff in the morning. The depression is abating (thanks Julie). But my hips are much worse and my hands feel like flippers. Even more discouraging, the fatigue is back - I wanted to sleep for most of January. And, the psoriasis is not better, and in fact may be worse.

Feeling good for a couple of months (in my case, Nov and part of December) but then sinking back into a deep flare (January) is not where my doc wants me to be.

So we are at a decision point. Our choices are:

1) stay on Humira every other week, and see how I do in 6 weeks with an additional anti-inflammatory drug (in this case Diclofenac).
2) go to Humira every week. This means my husband gets to stick me with a needle every week instead of every other week. (Thanks Jordan).
3) switch to Remicade - get an infusion every 6 weeks, at a hospital. Much less freedom.

(By the way, for all of you alternative folks - I am also on an anti-inflammatory diet, do yoga, and exercise the best I can, as well as seeing an acupuncturist).

We chose 1, for now. I'm going to consult with my other great doc - my dermatologist - before making a move to up the Humira or switch to Remicade. And I'm going to keep pacing myself. I can't do too much, I can't do too little. It's a fine balance.


  1. Hi JennyS just thought you might find this of interest to you. When I was on the Adalimumab (Humira) trial - at 6 months an assessment was done and patients who had not achieved a 20% improvement based on the American PsA score were automatically put on to weekly injections, I fell into this group (hence 5 and half yr later still being on weekly mono therapy). Interestingly I'd made what I thought was a miracle improvement on two weekly injections to my joints - I'd not felt this well in the previous 10yrs since diagnosis, so didn't expect to qualify for weekly injections - anyway my point being is that in this first 6 months on 2 weekly injections I had no significant improvement in my skin, yet on starting weekly injections my skin cleared completely and to date not returned, I am not symptom free but I've also never had it so good either and my mobility limitations are more related to damage already done before finding a drug that worked for me rather than current disease activity.
    I do waffle on a bit don't I!!!

  2. This is fascinating. We just decided on Friday NOT to up the Humira - but this really makes me think.