Life with sarcoidosis is like being stuck in a giant, real-life game of “Whack–A-Mole“. First there is the diagnosis phase. It’s cancer…whack and a miss…nope! Now it’s MS…another swing and another miss….nope! Wait…where is that sneaky little mole going to pop out next? It’s lupus….whack…missed again!
Okay…what is it then? How about we do a bronchoscopy, a mediastinscopy, open lung surgery or some other kind of biopsy to see if it’s sarcoidosis?
WHACK! Got it!
Then comes figuring out if you need treatment and if so, what kind? Are your symptoms bad enough to warrant treatment? What does that even mean? Are any organs being damaged by this disease? Who knows? Let’s do a CT scan and find out…WHACK! You’ve got fibrosis in your lungs. (That’s a fancy word for scarring, in case you didn’t know). Next comes an eye exam because your vision is blurred and your eyeballs hurt! WHACK again…sarcoidosis of the eye. Yikes!
So, yes…you need treatment.
Well then…what kind of treatment might be best for you? It’s really just a big guessing game. How about the “gold standard” for this disease, the almighty prednisone? That’s usually a good starting point. You begin taking this drug only to have wild mood swings, crazy blood sugars and unwanted weight gain, possibly leading to future problems with diabetes. Whack…did you miss again? Hum? Is it worth it? Is this drug even working?
Despite the weight gain and the moodiness, you are starting to feel less pain, you’re coughing less and your fatigue is lifting. Whack…got that mole right on the head. Good for you…this isn’t always the case!
Oh wait, now you’ve been on prednisone for six months and your symptoms are returning….darn! Here’s comes that pesky little mole again! What now? Let’s add an immune suppressor. How about methotrexate? Here we go again! Are you handing this medication okay or is your stomach in a knot? Are your symptoms better managed now? How are your labs on this medication? Is your liver doing okay? What’s happening to your white blood count? Now you need regular lab work to find out!
This is so exhausting…will it ever end?
After tolerating your new combination of medications, you experience a period of stability. YAY!
Hold on a minute….now you’ve got new weird pains. Your legs are weak and burning and you keep falling down! Are these related to your sarcoidosis? Who knows? A stupid little mole is poking out of that hole again…can you catch it in time to knock it on it’s head or will it pop out another hole before you even have a chance to address your newest problems?
These new symptoms require yet another full evaluation. Blood work…whack…oops that was a miss….everything comes back normal. How about more imagining…whack…nothing new shows up…missed again. It’s time for another biopsy.
WHACK…got it…sarcoidosis in a new place!
It’s time to rev-evaluate your treatment options again. Do you add a pain medication this time? Maybe it’s time to come off the prednisone. It doesn’t seem to be working for you anymore. Now it’s time for prednisone withdrawal…increased fatigue, vomiting, dizziness, joint pain….more fatigue.
After weeks of tapering off your prednisone, your disease returns with a vengeance. You can’t breath. Your eyes are blurry. Your chest is tight. Your heart isn’t beating properly. You need to figure out what other treatment options you have. How about increasing your methotrexate now that you’re off the prednisone? Okay…let’s try it…whack.…your stomach burns with pain. You can’t eat. You’re not tolerating the increase. Now what?
Cellcept…whack and a miss…no relief.
Plaquenil…whack…a gentle nudge….seems to be helping your skin lesions.
But all your other symptoms continue to rage and now you’ve got new problems…muscle cramps, bone pain and an irregular heart beat! What does it all mean?
Maybe it’s time to try infusion therapy….good luck….
And so it goes…you whack away at this disease one symptom at a time, one organ at a time, one medication at a time, in a feeble attempt to keep those pesky rodents in their holes, only to find yourself in an endless game of beating back those annoying little vermin!
WHACK…WHACK…WHACK….that’s life with sarcoidosis!