I’ve talked a little about this in previous posts and on social media, but enough things have changed in my health situation that I think it warrants an entire blog post about it. Especially if it helps other people feel less alone or better understand the implications of living with inflammatory arthritis.
We’ve changed my diagnosis back to psoriatic arthritis. Most of you probably don’t know this – since I started blogging regularly shortly after I had been relabeled as seronegative rheumatoid arthritis – but I was diagnosed back in July 2010 with psoriatic arthritis. There are very few differences between the two; on the surface, pretty much the only difference is the presence of, you guessed it, psoriasis. I do have eczema and have experienced a couple of psoriasis flares, and there is a history of really, really bad psoriasis in my family. But since psoriatic arthritis and seronegative rheumatoid arthritis (aka you don’t test positive to the RA blood test) have very few differences and there are a lot of treatments that work for both, we haven’t stressed too much about my label. However, we decided to change my arthritis treatment because the Rituxan infusions weren’t working as well as we wanted, and that led to a new question: what direction of treatments do we look in when the ones available are for either RA or PsA? Given my family history and skin history, we’ve decided to go back to psoriatic.
Like I said, I’m changing treatments. While the Rixuan infusions worked, we realized within the past year that they weren’t working as well as we would have liked. I never went below 54 affected joints and I never went below a 4 in pain (and 4/10 of pain in 54 joints is still a LOT), so it’s time to try something new. At the end of February, I’m starting Stelara injections. Here’s what’s bad about this, though: my last Rituxan infusion will run out at the beginning/middle of February and the Stelara won’t kick until for 4-12 weeks after I start it. So I’ll be in a ton of pain from the beginning of February to the end of March at the absolute earliest; assuming it works, it may not kick in until the end of June. This is going to be hell on earth. I honest to goodness wish I was joking about that. (PS – if you want to guest post, the next 2-5 months will be rife with opportunities to. Just email me at firstname.lastname@example.org; I’m having trouble with my katethealmostgreat.com email address).
I’m anemic again – and to the point where I need more iron infusions. “But Kate,” you say, “didn’t you just have iron infusions?” Yes, I had some in October. This is another super fun part of living with chronic inflammation; I can’t absorb iron like healthy people. There’s an entire type of anemia called anemia of chronic inflammation and disease. I knew I was anemic again when I went to shower one day and had 18 bruises on my legs and had no idea where they came from. Well, that and the fact that I sleep 8-10 hours a night, drink 2-4 cups of coffee a day, and still need a nap most days. So when I had a check-up with my hematologist last week and had my labs done beforehand, I wasn’t shocked at all when the appointment began with, “So I think you need more iron infusions.” Even better, unless I go on birth control, I’ll probably need to have iron infusions every 4-5 months forever – because, you know, people with uteruses lose blood every month and I don’t exactly absorb iron through iron supplements or food because of my chronic inflammation. The hope is that this way I’ll be able to need them less frequently.
I just had another cortisone injection in my knee. You probably already knew this if you follow me on Twitter because I was/am extremely annoyed that my knee surgeon surprised me with one. We’re basically just trying to stay on top of possible knee damage from inflammation – thanks, arthritis – and my personal goal is to make it 5 years in between knee surgeries.
I’m going back to Washington, DC as a part of the Arthritis Foundation’s Advocacy Summit! I’m so, so, so incredibly excited to learn more about advocacy, to have the opportunity to meet more patients, and to speak to my members of Congress about life with arthritis. If you’re going, let me know!