RA update + processing next steps

Happy Monday - in the US, it is a holiday so I’m off with the boys and will hopefully spend most of the day outdoors! Today’s post is about last week’s rheumatology appointment which I recognize is probably not interesting to many of you… but writing is (a big) part of how I process things. So feel free, as always, to skip! 

Bottom line, I should have sent a mychart message to my doctor letting her know how much I was struggling. I had been calling the nurses line for prednisone refills so as not to bother her. I know how busy doctors are and how many mychart messages they get so I was trying to be a ‘good’ patient. But my doctor said I need to message her when things aren’t going well so we can trouble shoot together.

She wasn’t happy with how high of a prednisone dose I had been on for so long (20mg for much of the last 2 months) and she thinks the flare is in a tendon rather than a joint so that is why the joint injection in April did not help at all. They can inject the tendon, but not until July as you can’t inject the same site within 3 months. So I am switching to a stronger non-steroid anti-inflammatory drug and hopefully that will help with the pain, and I will start tapering off steroids which is going to be a process since I’ve been on a high dose for so long. I can’t wait to be off prednisone because it has wreaked havoc on my sleep and makes me feel super jittery and extra irritable… 

The string of flares I have had in the last year+ has made it clear that the drug combo I’m on is not working. We have been switching things up for the last 9 months or so (increased the max dose of a drug (methotrexate), switched from oral to an injection of that drug, changed my super expensive other injection, etc). I’ve known the next option is in-clinic infusions but I was so opposed to this that I wanted to exhaust all of our other options. 

But given the pain I have been experiencing lately, I had recently come to terms with the fact that I needed to accept that it’s time to try infusions. I have had such a mental block around them for a variety of reasons. First and foremost, they sound like a huge hassle. Initially I will need them every 2 weeks and they will give the infusion over 2 hours to make sure I tolerate the meds. Eventually they can speed it up to an hour. So all in, I’ll be ‘off the desk’ as we say in our industry for about 3 hours when you factor in the drive, getting the IV set up, etc, but that will decline to about 2 hours eventually. She said patients bring their laptops and work during the infusion. So I can at least keep up with email and such during those appointments. And then once we figure out the right dose and cadence, I could have infusions as little as every 5-8 weeks. Which doesn’t sound too bad, especially if it means I am living pain free. It will be a process to get to fewer infusions but every 1-2 months doesn’t sound terrible. In the meantime I am going to have to do a really good job of tracking how I am doing so I can closely partner with my doctor to figure out the dose and cadence - I plan to use my W222 planner to track symptoms/overall health.

I think much of my mental block around infusions is less around the process (I handle needles/procedures well and have really good veins) and more related to accepting that this means I have a disease that is hard to manage. I can kind of gloss over the fact that I have a chronic illness or be overly stoic about it in a ‘it’s fine, I’m fine, everything’s fine’ way. But sometimes everything isn’t fine which is an uncomfortable place for me to sit. 

I have asked my doctor if I brought this on myself by taking on more responsibly at work last spring which means more stress and more travel. She said that is not the case and that if my disease was well-managed, I wouldn’t be having flares, even with an increase in stress and travel. I did have a long flare-free status quo period before we started a family, but since getting pregnant, my disease has been a lot harder to manage. She said this seems to be common among her patient population - it’s unexplainable at this point but there is a thought that pregnancy permanently changes your body and in particular your immune system, so different solutions are sometimes needed after having kids.

So now I wait for insurance to approve this new treatment plan (which is even more expensive than my $1k/week injections!). I’m hoping I can get my first infusion in June. 

I am grateful that overall I don’t feel terrible. The hand pain is a major inconvenience and definitely impacts day-to-day life since it hurts to write, shake hands, grasp things, cut up food, etc. But my feet joints aren’t impacted so I can still run and be active. That’s something I wasn’t able to do during the onset of my disease in 2013 so it could be worse. Afterall, running is such a stress outlet and also another way I process difficult things. But I’m crossing my fingers and toes that insurance approves this new treatment plan ASAP because now that I have come to terms with it, I’d like to start it ASAP so I can get back to full health.