With sarcoidosis, maintenance therapy isn’t always good enough

Ongoing symptoms leave me wondering, 'Is this as good as it gets?'

🦋 Kerry Wong avatar

by 🦋 Kerry Wong |

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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.

Comments

Karen Elsner avatar

Karen Elsner

Thank you for your sharing your story. It helped me see that my symptoms can be all related to sarcoidosis (even when my labs and scans are improved) and the way I when I just can't ... it isn't a weakness. I am not alone in my experience with sarcoidosis even if it feels like I am.

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🦋 Kerry Wong avatar

🦋 Kerry Wong

It is definitely not a weakness, Karen, and you are DEFINITELY not alone. Sometimes those feelings can be worse than the symptoms themselves ... but you have a tremendous sarcoidosis family that is always here for you.
~🦋

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LEE SANDERS avatar

LEE SANDERS

Thank you for sharing, I don't know anyone personally with Sarcoid, so I thrive on others story! I was diagnosed with Lyme for years before Sarcoidosis and at the time there was little known about either so they just let me sit and stew. Sometimes if my skin was bad enough they would prescribe a little Tetracycline and I suppose it didn't hurt me? What hurt was Covid, in March of 2020 before any vaccine or even tests, My dentist infected our entire family during routine exams. Luckily, I was the only one that got sick, and I've had long Covid since, but hey, I am still here! Lung issues have worsened and I lost a lot of weight, which was ok, but not happy with my lungs and heart misbehaving after years of maintaining!! Just wondering, anybody else get worsening of their Sarcoid after Covid? Or experience long Covid along with worsening of their Sarcoidosis? Luck and Hugs to ALL! Lee

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🦋 Kerry Wong avatar

🦋 Kerry Wong

Sadly, I have heard that quite a lot -- friends with sarcoidosis who got worse or at least never got better after having COVID. I've even heard some say that the attention given to long COVID these days may lead to greater understanding of conditions like Sarcoidosis (let us hope!) I'm glad you are still here, and hope your body begins to behave better. Sending hugs back to you.
~🦋

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Frank Thompson avatar

Frank Thompson

One of my doctors summed it up for me by stating that I am complicated. Sarcoidosis is very complicated. It is hard to diagnose, poorly understood and crosses multiple medical disciplines. I believe that the multiple medical disciplines is the biggest issues to deal with. For the last 18 years I have had an impressive ever changing group of doctors trying to help me. They are not a team. There isn't any coordination between the various disciplines. Hence, each doctor is looking at just one piece of the puzzle. Once your testing for their discipline approach normal; they are done and you are in maintenance. The only person who sees the whole puzzle is the patient; normally, the person with the least medical training. Without a coordinated approach, our chance for real success are not realistic. I suffer with all of your issues and yet I am encouraged by the small steps toward normalcy. Don't accept that this is all there is.

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🦋 Kerry Wong avatar

🦋 Kerry Wong

You are so right, Frank! At one point, most of my doctors were within one medical group, so they all had access to each other's notes and could communicate easily. The problem was none of them were sarcoidosis specialists. Now I have a few who are more familiar with sarc, but they're all in different groups. We definitely have to stay on top of it all ourselves. And I agree - this is NOT all there is. There is always hope.
~🦋

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