Tuesday, August 4, 2009

N=1 - Remicade update

Ok, I'll be honest.

I love the mousie.

I was pretty worried about Remicade - I think the whole idea of having an "infusion" was scary, and made me feel sicker. Sitting in a chair for 2 hours pumping in a mystery drug sure smacks of big illness.

But the truth is, I have big illness, something I am violently reminded of whenever the Remicade wears off and the Psoriatic Arthritis takes over.

For me, Remicade really works. I'm riding my bike. I'm running through the forest chasing my son. The other day, in the garden, I found myself squatting to determine whether a new seedling was a weed. It was, and half-way through pulling it I realized I was squatting. I haven't mindlessly squatted in years. A silly thing to celebrate, but celebrate I did.

My point, however, is not that Remicade works. My point is that Remicade works for me. I tried Methotrexate, Diclofenac, Humira, even crazy levels of Ibuprofen. It has taken a year and a half and 3 rheumatologists to find something that works for me.

So don't give up. I now believe that you can feel much, much better, with whatever is the right treatment for you. Be patient, give each thing a decent try, and don't settle for less than remission until you have to. (I was on Humira for almost 6 months, and as regular readers know, I thought I was "better enough". It took my savvy rheumatologist reading this blog, and dragging my butt back in to her office, to make me realize that I was settling for less than remission).

Don't give up. You too will squat again. It feels great.


  1. Hi JennyS
    Found your blog looking for more info on methotrexate and trying to decide whether I need to get back in touch with my rheumatologist again. Thought this was going to be the drug for me - finally had a couple of days pain free last month after years of having pain in various sites for many years and feeling like I was walking on glass for 18 months. I had to request my GP to refer me to another rheumatologist because my last rheumatologist patted me on the back, told me it was probably fibromyalgia and suggested it was in my head. When my feet became so bad I found out about PsA over the net and my new rheumatologist confirmed my suspicions straight away. After a while, I seem to react to the drugs I am prescribed and think this is now happening with the methotrexate. Have spent the day lounging around feeling nauseated and counting the pain spots - oh what a life. Still i have had some great days so I'm not really complaining.
    SB - another downunder

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  3. Hey Anonymous Downunder - Methotrexate seems to be great for some, but boy, it knocked me for a loop - and if you look at my october posts, you'll see that it also worsened a disease I already have - Lymphocitic Colitis. So I argued my way out of it, and that's how I got on the humira. GOOD for you re finding a better physician/patient fit. I went through three Rhumatologists til I found my doctor. Hang in there - keep trying different things and be patient.

  4. Thank you for this. I needed this today. I start infusions for the first time next week, and are currently no where near squatting. Thanks for the reminder that it can and will get better.