How Low Can You Go?

Last updated: May 2018

"Every limbo boy and limbo girl...all around the limbo world"

RA: an ultimate lesson in waiting

I have that silly Chubby Checker "Limbo Rock" song in my head right now, mostly because the word "limbo" popped in there again when thinking about the current state of my RA. "Limbo" seems to be a recurring theme in my life these days. I feel that I'm almost always stuck and in limbo waiting for one thing or another`: stuck waiting for medical answers, waiting for medications and treatments to work, waiting to get over illnesses, waiting for doctor appointments, waiting to lose weight, waiting for pain to subside, waiting to fall asleep, waiting to go back to work, waiting to catch up with things, waiting to travel, and waiting to move forward with my life in the ways that I want. Always waiting.

RA and the struggle with prednisone

One part of my RA or "Chronic Life" that feels almost constantly in limbo (and out of control) is my struggle to taper down and off of prednisone. It's been at least three years, I think, that I've been stuck taking this wonderful yet horrible medication without any breaks or periods of being able to get off it--which is frustrating and worrying. I'm so tired of the back and forth, up and down, and the uncertainty of taking this drug. Mostly I'm just tired of WAITING to be able to go down and stay down in dosage, and completely get off of it for a good length of time.

Just recently I've had yet another prednisone setback after a seemingly hopeful and positive several weeks of steadily decreasing my dose each week. Dealing with this constantly is infuriatingly slow and full of many setbacks as well as successes. A quick or stable process, it is not--and it drives me crazy. The highs and lows (and in-betweens) of the dosage often correlate with the highs and lows of my moods and especially my anxiety levels. After 20 years of being held captive by this drug, I wish so much that I could stop taking it once and for all.

Yo-yo-ing on prednisone

Going low and staying low is always an important part of my treatment goal, and I invariably feel that just as I start to truly reach that goal, my RA flares up without warning and I'm forced to bump up the prednisone once again. And start all over. This is what I'm dealing with right now: After weeks of tapering down by one mg each week after taking 10-15 mg steadily for a long time, I finally reached one mg per day. One milligram a day! I was so close to getting off of this powerful drug and able to soon say goodbye to its numerous and nasty side effects.

But then, of course, both of my feet and ankles suddenly swelled up into two giant and painful balloons seemingly out of the blue, making walking or even standing feel impossible. While my feet grotesquely inflated, my spirit rapidly deflated, and I was filled with the familiar feelings of disappointment, depression, and fear.

So! Here I am, back at it, back playing the "prednisone game," and trying to see how low I can go before my body rebels again. A couple days after increasing my prednisone to 5 mg a day, as well as being much more strict with my diet (which is supposed to be vegan), both of my feet and ankles began to improve quite a bit. Whew. Seeing my feet look more like normal feet again immediately helped to ease some of my anxiety yet also made me question what exactly made them get better. Was the flare-up due to going too low on my prednisone or was it my recent bad eating habits? A combination of both? Who knows; it's always a guessing game that feels like some never-ending experiment being performed on my body.

More questions, as usual, continually go round in my head. Do I need to taper down on the prednisone even more slowly this time? Is the flare-up a sign that the Rituxan isn't working? Is my diet to blame? There are always so many questions in these situations and hardly ever any concrete answers. One thing I do know for sure, however, is that my desire and determination to stop taking corticosteroids after all of these years of living with RA will never lessen or go away.

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