Posts Tagged methotrexate

Visit to the Rheumy and the Enbrel Chronicles

First of all, I want to say that I love my rheumy. He is always optimistic about my improvements and the possibilities of getting better. As he assured me during our last visit, “You’re probably 80 percent improved since the first time I saw you, but I promise you will get much better from where you are today.”

Hearing him say how far I’ve come is a great reminder to appreciate your victories instead of focusing on what still isn’t perfect. So I had a small celebration for the realization that it’s been more than a month since I’ve had severe morning stiffness – woohoo!

I’ve made progress, but I have a ways to go. It sucks that I was in the middle of a mild flare when I saw him (still am), which is effecting my feet, wrists, energy and digestive system (or is that the meds, ugh). It made it all the more frightening when he said I have to go down to four methotrexate pills per week from six because the results of my liver function panel weren’t good. I just hope that going down on the meds don’t make my symptoms worse.

I asked him if my current flare might be related to the 10K I ran over Memorial Day weekend, to which he replied, “You can drive yourself crazy trying to figure out what causes what with this disease.” True, and I know that I’m guilty of this.

I explained that pre-diagnosis I was planning on training for a marathon in 2013, so I was worried that running wasn’t good for my body. He encouraged me not to give up that goal, which I love him for. So I guess despite the pain (it usually hurts after, not during running) and fears of making it worse, I’ll keep the goal and see how my training goes.

I also asked him about a weird blood burning sensation I’d had in my arms, especially near my elbows. That one stumped him a bit, but he said it wasn’t a concern unless it was happening frequently. If the symptoms are frequent, one concern is that the Enbrel is causing some sort of neurological side effect (great…). I haven’t had it since then, so I guess I’ll follow the “don’t worry” advice.

One more thing of note, I must of hit a blood vessel or vein giving myself my Enbrel shot last night because it bled, a lot. Eww. Aside from being gross (I’m a total wimp when it comes to these things), it’s fine. It barely even bruised compared to some of my less bloody shots, so go figure.

My takeaway from all this is to try to worry less and really, really try to not let RA rule my life, choices, or mood. Easier said than done, but that’s what I’ll try to do.

 

EDIT: Just want to add that during my first run after this doctor visit I choked on a bug – it just flew down my throat, gross! And so, another lesson (channel Stewie – What did you learn?): a) don’t run with your mouth open, and b) don’t run at dusk. Let’s hope this isn’t a bad omen for my training, haha.

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Double Whammy

Along with a mild flare and a new fun symptom (more on that in a minute), I got a call from the nurse saying that my blood tests flagged my liver function panels as high. For me this means dropping down to four doses of methotrexate per week instead of six and following up with another blood test in a month. This scares me, and is especially bad news to get on a day when your symptoms feel worse than they have in awhile. I don’t want to mess with my meds if their helping. Will my symptoms flare? Will it slow remission progress? So many questions.

Also, there’s this sense of I coulda done more to help my liver while it’s working so hard to process these crazy chemo drugs. I haven’t 100 percent abstained from alcohol (my rheumy said five drinks per week was fine) for example. For those of you on mtx, did you cut alcohol completely? Anything else you’re doing to help your liver?

And then there’s this weird feeling I’ve had all day as if the blood in my arms is burning. Like my arms are on fire from the inside out, especially by my elbows. Has anyone experienced anything like this? Is it a vitamin deficiency, med side effect or RA side effect? Or maybe I’m going crazy. I’ll be asking my rheumy tomorrow, so I’ll let you know what he says.

Despite the burning and flare symptoms, I made myself lift some weights and do some yoga. The distraction was great at least, but now it’s back to burning.

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Meeting My Rheumy: Well, at least I didn’t cry.

I finally had my appointment with my rheumatologist today after a week of going through potential outcomes. I brought my mom with me to have another pair of ears and the support.

The diagnosis was immediate: “You have rheumatoid arthritis.”

I can’t say it didn’t suck to hear it like that. I’d expected a little bit of mystery, deliberation, maybe a “you’re OK.” But I also can’t say I was surprised. I nodded as he went over the reasons why he was sure – positive for rheumatoid factor and anti CCP, bone erosions, clear inflammation.

Then he asked questions that shed a light on ALL of the symptoms I’d been feeling but hadn’t linked to my “sports injury.” Have I been tired? Down? Depressed? Experienced insomnia? Anxiety? Stomach issues? Yes. Yes. Yes. Yes, yes and yes. Majorly. Dry eyes and mouth? No (something I don’t have, yeah!).

I walked away from the appointment with a diagnosis, a plan and an odd sense of hope and relief. My rheumy believes we can get this into “remission” in six months. My rheumy says I’ll be able to have a family in the future if I choose to. My rheumy says that we’ll minimize permanent damages. That there are a lot of good drug options.

So, of course I left the appointment sad, with a million additional questions and overwhelmed at my new drug plan – A cancer drug? Giving myself injectables? But I was also relieved to be doing something and to have a name to put toward everything I’d been feeling.

I promptly filled my prescription for methotrexate, prednisone and folic acid and started the process for getting insurance approval for Enbrel.

I went to happy hour with my mom and close friend, nervously going over the prescription info and bringing my friend up-to-date.

And then, with a ton of trepidation (Is this severe of a treatment really necessary? What about the side effects? Will it make a difference?), I popped those six itty-bitty MTX pills and began my new life. A new life on drugs, but also a new life on the pathway to some sort of relief and recovery.

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