Saturday, May 14, 2016

Been a while .. for a couple of things.

I knew it had been a while, I did not realize it had been nearly two and a half years. (Tap, tap, tap) Is this thing on?

Long story short, I never resumed the Humira and I rejected every suggestion Dr. Z made for another biologic for a long time. I grew weary of the weekly methotrexate shots and decided to try pills again all the time instead of just every so often. Choking those down made me want to sleep through Wednesdays altogether just to avoid it. (I didn't do that - sleep through an entire day - because I have way too many responsibilities. Since my last post, my daughter was hospitalized for DKA, I help a little at the dance studio where my daughter attends, my grandmother moved here and relied on me for everything until she passed away last month, and my other daughter is a high school senior this year. That's why it's been so long since I sat down to blog.) So, last fall, I caught a little cold and stopped methotrexate. Spoiler Alert: I never restarted it. I would visit the doctor and tell her I was worried about restarting it because I knew there were germs being spread in the house, between people I was around a lot. She'd look down her nose at me and tell me to get back on it. I wasn't missing it, not one bit.

Let me backtrack just a little. One day, I was calling Medtronic to inquire about my daughter's pump supply order, and I got to chatting with the representative about shots. She has RA, too. She hated methotrexate, too. She had a nasty immune/infection response to Humira, too. She even had the same food triggers as me. She told me about Symponi Aria, an every other month infusion. It is a step off Remicade, which is similar to the clinical trial drug I did all those years ago. It was working really well for her. And she got off methotrexate. SOLD! I talked to the doctor about it (I was still taking methotrexate at that point), and she sent me home with paperwork about it, the office had Big Pharma send me the financial aid stuff (because, you know, even people with insurance can't afford any of this crap ... except methotrexate). I didn't read any of it (see above about life and being busy), I just went with it as soon as I felt well enough to do it. By the time I had my first infusion, I'd been off methotrexate nearly six months, but my doctor wasn't fully aware of that until my second infusion. (For the record, I DID tell the nurse doing the first infusion. When I did confess to Dr. Z, she just shook her head and said, "I know why you hate it. Everybody does. Just stay off it.") I've now had 3. For the most part, it's working okay.

One weird thing, though. When I took Humira, I developed a very uncomfortable swelling on my underwear line, like down there, you know. Pretty sure it was a lymph node. Hurt like a son-of-a-bitch. When I talked to Dr. Z, it pissed me off that she dismissed it as "probably just an infected hair from shaving". It kept getting bigger with every Humira shot (which was every two weeks). It went away when I stopped taking Humira. Not a coincidence. Not an infected hair. A few days after my first Symponi infusion, I panicked a little because THE SAME SPOT began to swell and be tender. I coated it religiously in healing salve and it was almost healed when I got the second (booster) infusion four weeks later. Then it got bigger again. More healing salve. It was a good long time (about 6/7 weeks) before this most recent one, and it is nearly gone, not quite. I'll (try to) report back on that (in case I actually have any readers).

This stuff seems to work pretty well for me, especially immediately after the infusion. I sleep like a rock that first night (and I am always in need of good sleep). The pain in my hands is never fully gone, but it was like a damned miracle for what had become constant shoulder pain. Morning stiffness in the weeks right before my third infusion has been a bit more lingering than it was in the past. But, that's par for the course, right? I mean, I have rheumatism, for fuck's sake. I feel like, partly because I have had such major things happening in my life and have stayed insanely busy (and thus, exhausted), I can't accurately judge the relief of this med just yet. So, I'm going to give it a go for a while, take the gawd-awful laundry list of risks that go with it. Suck it up. And if I were the praying type, I'd be praying like hell that I never, ever, ever have to try methotrexate again. Man, I hate that shit.

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