"Oh, crap. No!" "Wait, this can’t be happening." "Well, darn."
Do you ever find yourself saying such phrases in your head or under your breath? I’m a little hesitant to say it, but I’ve silently mumbled at least one of these phrases before when my RA hands were beginning to not feel so good.
One of those times occurred this summer when I had to go off of my methotrexate (MTX) for a few weeks. Because I had an infection and needed to take antibiotics, I was unable, or advised, to NOT take the methotrexate during this time. Since I usually take my weekly MTX on Friday night, and I started the antibiotics on a Friday afternoon, the level of methotrexate in my system was already lower at the beginning of the two week antibiotic cycle.
If you don’t know, it is very important to avoid taking antibiotics and methotrexate at the same time. There is an issue of toxicity of the methotrexate as antibiotics tend to prevent the complete break down of MTX. If MTX can’t be broken down appropriately, higher amounts may be found in the body.
I personally like to think of letting the methotrexate set aside (by not taking it) to allow the antibiotic soldiers to go in a do their duty (killing the infection). Fortunately this summer, the antibiotics I took for two weeks did just that. Unfortunately, the RA mischiefs decided that it would be a good time to act up a bit.
The pain started with an extra stiffness in my left hand. I thought that maybe I was typing too much or playing too many computer games where I hold my hand in a lose fist and typically use just one finger. But after a few days, it was my left foot which joined in the ‘party.’
Moving my toes became a practice in slow motion. When my boyfriend offered a foot rub which was so very sweet of him (and I wouldn’t ever want to turn down or discourage a foot rub), I couldn’t stand the pressure or even the gentle movement of toes. Ouch!! Stop!
Enter very unhappy Lisa face. Seriously, who turns down a foot rub?
Since starting methotrexate in 2007 and Rituxan in 2009, I have been blessed with relatively low disease activity. Sure I will have bouts of extra stiffness, swelling, or tenderness, but nothing which compares to the pre-diagnosis pain and disability I experienced. I am one of the lucky ones who responds to drug treatment.
Even with Rituxan in my system, I absolutely need to continue taking methotrexate. If I skip a dose, I can feel it. If I have to skip two doses, I really can feel it literally in my hands, fingers, toes, shoulder". you get the idea. If I skip three doses, I’m secretly praying that relief will come once I can start it up again.
The fear of not finding relief becomes so great that it is hard to look at. The fear of what this disease ‘wants’ to do if left unchecked can become powerful. The fear of losing a grasp on remission was the greatest unspoken fear I experienced this summer. I was anxious to get to take all my meds again.
When I blogged about this in August, here is what I said:
"Well, the past three weeks have proven that the methotrexate really DOES help keep my RA under control. That’s the good news.
Now I just wonder how long it will take before my feet will stop feeling like they will break, my hips/knees will move smoothly again, and my knuckles will stop their slow swelling.I hope that it works as quickly as it works well.
Besides the pain increasing, my brain is foggy.I’m TIRED and have slept each afternoon for a couple of hours.As a result, I haven’t done my normal amount of writing/researching.I’m slacking, I tell ya."
Getting back to my meds proved to be effective. It wasn’t immediate, but the pain and swelling did recede. My body returned to ‘normal’ after a couple of weeks and I was able to move on. But I wonder about this type of transient flare-up and I wonder about the remission which only sustains while continuing medication.
Is it a true remission?
I don’t know the honest answer to that question and will ask my rheumatologist during our next visit. What I do know is that the fear of RA coming back full force is real. Thankfully, my experience was a temporary one. Not everyone is so fortunate.
What about you? Have you experienced a temporary flare-up as a result of stopping your meds for a brief period of time? How long did it last? Did getting back on your medication make the flare die down quickly?
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.