With sarcoidosis, maintenance therapy isn’t always good enough

Maintenance. It’s a concept I’m quite familiar with. Years ago, when I was following (and later working for) a weight loss program, maintenance was the dream. The idea was that once you reached your goal — when you’d lost the weight you wanted to lose and were the size you wanted to be — then you’d switch to maintenance. At that point (and, theoretically, forever), you’d make adjustments and do what it took to maintain that goal weight. Woo-hoo!

Years of illness, disability, and medications that cause weight gain have taken me far, far away from my goal weight. But that’s not the kind of maintenance that’s on my mind right now.

Last week, I had an appointment with my neurologist. I didn’t have a new problem; it was just a routine follow-up for sarcoidosis-associated small fiber neuropathy (SSFN), which is how sarcoidosis presents in my nervous system. Though sarcoidosis also affects my lungs, lymph nodes, skin, and joints, my doctors believe it’s SSFN that causes the majority of my problems.

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Even though the idea of having a disease in my lungs is scary, and getting out of breath just walking from one room to another is beyond frustrating, I can see their point. SSFN is what causes my autonomic nervous system dysfunction, also known as dysautonomia. Together, these nerve conditions lead to symptoms that feel a lot worse than they sound:

• Severe fatigue isn’t just being tired. It results in me needing to sit and rest for an hour after taking a shower — or the shower itself requiring more effort than I can give.
• Temperature dysregulation can leave me needing towels on the couch, on my head, and under my clothes to absorb all the sweat. Even while I’m dripping, my hands and feet are so cold that they hurt or go numb.
• Uncontrollable drops in blood pressure can make me dizzy upon standing, reaching, or even sitting up. Before I realized what was happening, that led to episodes of syncope (fainting). One of those episodes even led to my first broken bone.

And the list goes on.

Making progress … or am I?

Still, when I saw my neurologist, the Pollyanna in me took over. I told her about how much better I’m walking since my hip replacement (though, as both she and my physical therapist have noted, that leg seems to be angled inward as I walk now). I told her about the weight I’ve lost since I last saw her (though I’ve still got nearly 100 pounds to go). I told her about the weird sensations I get on the outer sides of my thighs (meralgia paresthetica), but because it’s not painful, it wasn’t a priority for me.

Then we talked about my treatments. I’ve been getting weekly intravenous immunoglobulin infusions for SSFN for the past four years, and they’ve been very helpful. A few years ago, I asked my neurologist how long I should expect to continue this therapy. She said indefinitely.

So I was surprised when she talked about reducing the frequency of my infusions. She now wants me to go three weeks on, one week off, and, down the line, reduce again to every other week. She explained that I’ve been on the therapeutic dose long enough, and it was time to move to the maintenance dose.

At first, I was excited — that meant I’d get one weekend a month back. I could take that time to do anything I wanted. This was progress! This was freedom! I’d have time to make plans, time to go out, and time to do things. (Who am I kidding? I don’t have the energy to go out and do things every month.) Still, woo-hoo!

But then I thought about it. Maintenance therapy. Doing what it takes to maintain this goal.

The thing is … I didn’t reach “goal” this time, did I? I’m still dealing with so many symptoms that are tolerable at times and debilitating at others. I still have to cancel more plans than I keep. I still have to plan for days of rest after any moment of activity. I still hurt. I still get dizzy. My blood pressure still drops. I still sweat uncontrollably. I still get pins and needles and numbness and chills. But this is what we’re now set to maintain.

That means, as far as my neurologist thinks, this is as good as it gets for me. Perhaps I was a little too hasty with that “woo-hoo.”

I understand that there’s no cure for sarcoidosis or my other conditions. But that doesn’t mean I have to stop trying to feel better than I currently do. Now’s the time to advocate for myself. Fortunately, I have an appointment with my rheumatologist next week, so I can get started on that right away.

Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.