RA Update

I saw my rheumatologist yesterday and we discussed different medication options. Back in August, she added sulfaSALAzine to the methotrexate, which has become less effective. I’ve been struggling to take the sulfaSALAzine consistently, because it needs to be taken twice a day, with food. Because of the gastroparesis, I don’t always eat dinner if I’m digesting slowly. I also am not remembering to take my pills when I’m eating, and they have to be taken with food. The methotrexate is also starting to cause some nausea again, and my dr thinks my hair is getting thinner again, like it did when I was on the Mtx pills. So... we talked about other medication options. I was really hoping for a once daily pill that didn’t have to be taken with food. As it turns out, that’s not really an option. There are other pills, but the side effects won’t play nicely with my gastroparesis, so my dr really doesn’t recommend them for me. The other options are more injections that would be used in conjunction with the methotrexate I’m already on, or, if I want to get off the methotrexate, IV infusions. She recommends Orencia, so I’m looking into that.

It’s been 5 years since I went on the methotrexate. My joints have responded well to it. We knew at some point it wouldn’t be enough. All of my medication options are more complicated, though, not simpler. I feel like managing the RA is like running on a hamster wheel, and I’m ready to get off. But there’s no getting off, and I’m struggling with that. I’m 39 years old, and this is the rest of my life. Assuming I live to 80, I’ve got 40 more years of trial and error medication taking to find something that works until it doesn’t. Most of the options are used in conjunction with methotrexate. I thought I was okay with having RA, and here at the first transition to new meds, the first of, potentially, many bends in the road, I find myself grieving this disease all over again.

Am I just not trying hard enough to make the sulfaSALAzine work for me? My labs have improved on it, even with my VERY spotty dosing over the past few months. Can I ask Leif to do the injections for me so the methotrexate isn’t such an ordeal each week? It’s gotten bad enough that I’m missing doses of that from time to time, too. Would it be better if I handed the needle to someone else and let them do the sticking? Can I better handle the pain if it’s not self inflicted?

My insurance company has been hounding me to get signed on to the Accordant Care program. It’s free, and will supposedly help me manage my RA treatment plan. I’ve been debating about it for 6 months or so. They’ve sent me the paperwork three times and call me every couple weeks about it. I filled out the paperwork yesterday. I think I’ll put it in the mail today. I figure if I am going to have to deal with medication re-evaluation every few years and most of the RA meds are going to be things I have to fight to have covered by insurance, and (unlike methotrexate) are prohibitively expensive without insurace, maybe being in this program will give me someone on my side who can help me appeal to insurace.

Is the bad that I know better than the bad that I don’t know? Do I just resign myself to taking methotrexate for the long haul and feel crappy for a day or two with each weekend dosage? Is this just part of the deal? Do I double down my efforts to make this regimen work, or do I move forward with the Orencia infusions, believing, hoping, that they will offer me something better? Is there a door number three?

I told Leif last night that I feel much more comfortable as the one who loves the worse of “for better or worse” than as the one who is the worse of “for better or worse.” I don’t like being broken. I want to have better to offer people than this broken version of me, and I’m struggling with that right now.