Wednesday, February 12, 2014

Psyching myself up for Methotrexate...while plotting away at my line graph.

Per last week's post, you know I had some homework to do. At my last appointment, my doctor suggested that I try methotrexate, a drug that, up until now, I've never had to consider. Over the past several months, my joint pain and swelling has been a bit unmanageable, so he thinks we should try something new. I asked for a couple of months to a) think about it and b) give my current medication one last shot at managing my symptoms. I'm currently in the middle of tapering off (yet again) 10mg of prednison daily - headed to the goal of 5mg every other day. As I'm right in the middle of my taper (I'm down to 5mg every day), it's a good time to do a bit of assessing.

Here's are the questions on the table:

1) What's methotrexate, and what would it look like if I started taking it?

2) What does my current level of disease activity look like? Is it something I can tolerate? Is it something I should tolerate?

3) If my current level of symptom activity is manageable, is the lifestyle I've adopted to keep it that way manageable?

Let's take number one: Methotrexate The goal here is to simply psyche myself up for Methotrexate. I can't think of it as "the drug I really don’t want to take”, which is the way I felt when my doctor brought it up. Instead, I need think, “here’s a drug my doctor’s considering – what are the pros, the cons, and how will it compare to what I’m currently taking (re: side effects, symptom control, etc.)?" Oh, what medical maturity the latter requires!

But I've done my due diligence. I've researched the drug online. I've asked my other doctors for input. I've talked to my friends who are on it. I've considered the side effects and the limitations, and mentally prepared for them as much as possible.  Most importantly, I've acknowledged that if my current medication regimen isn't doing the job, I need to find something that will. Sure, it's difficult to comprehend why my beloved combination of plaquenil and prednisone has suddenly stopped working...after all these years. And I could continue to search for answers, or even worse, try and force my body to conform. But what would be most productive is to listen to my body, and accept what it's saying. If my disease has changed such that my medication needs to change, then that's what I need to do.

Number two - symptoms. Are they manageable? The only way I know how to determine how good or bad my symptoms really are is to track them. When I'm dealing with varying degrees of joint pain and swelling from morning until evening, and sometimes through the night, there's no way I can accurately or objectively log that activity in my head. I start getting yesterday's symptoms confused with the day before, and before you know it, I can't remember how long it's been since I haven't been able to turn over in bed, or fasten my clothes first thing in the morning. So it's back to logging I go.

I started charting my symptom activity via My Lupus Log, an app on my phone. I included a note with each day, attempting to document how disruptive the symptoms were to my daily routine. I also noted how often the pain lasted during the day, and how it affected my overall quality of life. At this point, I’m not interested in what factors might be contributing to my flare. I just want to know how well my current medication is managing that flare, and how reasonable (or unreasonable) that level of management is. 

While the app helped, it wasn't exactly what I needed. Here's why: my symptoms change almost every two hours. I might wake up with pain that's a 6.5 to 7 on the pain scale, but within 3-4 hours, it's down to a 4.5. And then by 2pm, it's down to 1.5. I wasn't able to figure out how to track that kind of detail on the app, nor on my chronic control spreadsheet. So I created something new - a line graph (example below) that allows me to plot my pain levels every two hours (or actually every hour, if necessary.)




It's working quite well - and the visual picture of what I've been experiencing is really coming into view. (It actually looks quite similar to the generic picture of a line graph I cut and pasted from google images above. Imagine the hours of the day on the horizontal axis, and my pain level as the vertical axis. Ignoring the initial plots at zero on this graph, my pain starts out high in the morning, and then falls to a reasonable level by the middle of the day.) 

I'm hoping that the pain variance is primarily due to the fact that I'm tapering off of prednisone. Every time I go down a step (usually by 2.5 mg), my body takes about 10-14 days to fully adjust and for the pain to level off. But at the 7-10 day mark, I'm about ready to throw in the towel! I'm also preparing myself that the "next step down" may be one step too many. But I've got my graph, and I'm not afraid to use it - although thankfully, I have another two weeks before the next taper!

I'm going to hold off tackling question #3 until Friday, as I think it deserves a post of its own. I have some more tracking to do in the meantime - know that I will continue to "plot" as the plot continues, and I'll be sure to keep you posted!

2 comments:

  1. Thank you for this post and putting into perspective pain levels throughout the day and how long it takes for your body to even out after tapering your Prednisone. It's nice to feel like you're not alone, although I'd rather not have to be aware of all this & go back to being 100% healthy again. Wouldn't that be nice!

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    1. Oh, but how would we fill our day if it wasn't for lupus and all of her issues?! :) Glad u can identify...good to hear from another that I'm not crazy!! Take care--

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