“Give us this day, our daily Preds”

“Give us this day, our daily Preds”

If there is one unequivocal truism that I have learned about Sarcoidosis, it is that the disease is rarely seen in public without its conjoined evil twin; the corticosteroid drug: Prednisone. And if there is one truth that I have learned about Prednisone, it is that it makes most people as miserable (and, in some cases, arguably more miserable) than Sarcoidosis itself.

I remember my relief at first finding out my instant-cancer was actually a funky sounding thing called Sarcoidosis (insert knowing grumbles here.) As I recuperated at home from my game of surgical “tag-you're-it” with my mediastinal lymph nodes, I looked up Sarcoidosis on the computer and happily announced to my wife that it was nothing to concern ourselves about, and even if it was more than the prophetic 36-month-til-permanent remission (insert raspberries here) all I would have to do is pop a few ‘corticosteroids’ (ie: Prednisone/Prednisolone) and I would be right as rain. (insert bitter laughter here.)

Oh yeah… I was blissfully ignorant.

Here we are some four years later and I am very glad that I had the good fortune to not need to take Prednisone and the good mind to read up on it before my beloved doctor Do-Very-Little had a chance to load up a Marty Moose PEZ dispenser with the jagged little pills and tuck them happily in the pocket of my backless gown. And all because the greasy aftermarket maintenance book on my make and model says that’s what your supposed to do when confronted by sar-coy-doh-ssssss-is. A disease he had to look up after I taught him how to pronounce it.

Frankly, what I read about Prednisone scared the living bejesus out of me. Here we are some four years later, and after reading your testaments (both good and bad) about this nefarious drug… it still scares the bejesus out of me. And, maybe, the Jesus into me, as I fall on my knees and thank the Lord that I am not that bad off to need the heavy hand of Prednisone intervention.

As I have mentioned in other articles that I have written on the subject, I understand that Preds can be a lifesaver for those in the worst throes of Sarcoidosis. But I also believe that it is prescribed too readily… too easily. And as anyone who has weaned off or tried to wean off them, knows; they are next to impossible to kick without several homicides and a parking ticket involved.

The bad wrap that Preds get is well deserved; as well-deserved as its ability to often beat Sarcoidosis inflammation back into whatever fetid hole it crawled out of. So what is it; knight in shining armor? Or is it more akin to Dr. Jekyl; healing your little Sarkie bottom just before feasting on it as Mr. Hyde.

Certainly the laundry list of Prednisone side effects; both starting; continuing; and weaning; are a little shop of horrors in itself. I read your comments day after day on the subject. And often it sounds as if there is a terrible tag-team match going on; Prednisone tagging in to reap havoc with your body while Sarcoidosis heads off to the locker-room for a Lucozade.

The most unnerving aspect is that Prednisone seems to hit with the ol’ one-two; both physical and mental yokes that creep up so insidiously slow, that by the time one sees one’s new prednisone-self in a mirror; you would half be expecting an episode of Messing with Sasquatch.

But if that were not enough, at least Big Foot does not bawl like a little girl after the toast falls butter down. Or makes the pimple-faced kid at the local hamburger joint wear a strawberry shake because he called you Sir in spite of your hairy bra. I have a very good friend here that is a medical professional, understands the nuances and science behind prednisone use; and regardless of all that, still nearly went Jack Nicholson on his wife for leaving the toilet seat down while he was weaning off Preds. Ain’t that a switch?

My heart goes out to all of you that struggle with Prednisone use. The frustration in your letters and notes is palpable and bitter. Its hard enough to endure Sarcoidosis, but then, to endure the side effects of Prednisone on top of all that is tantamount to being a prisoner. The effects of Prednisone to make Sarcoidosis bearable and the heavy ball of its side effects hobbling what little life has been saved.

I have received a number of messages to create some concepts to help people vent and express their frustration about Pred use; almost as many as about Sarcoidosis. So that family and friends can see the inner struggle that that jagged little pill causes everyday. I have tried to quantify your stories and anecdotes into a few designs; the ones you see here, and more on the way.

As I have said before, it is most important to shout our frustrations from the rooftops; it is not enough to quietly endure. Dad was right; the squeaky wheel gets the oil. And as far as I’m concerned, Prednisone is part of the Sarcoidosis problem, not the solution. Join me in making some squeaky noise about our cause.

C'mon! Squeak with me!

— My name is theGardener; I have two dogs, a cat, and sarcoidosis.

p.s.. I have an addendum here; sorry I forgot. In the late 80's I had a bout of Bells Palsy (looking back, probably an undiagnosed Sarc symptom at the time) and was treated with a Prednisone "burst pack." I do remember the Doc telling me that I must finish all the pills... especially "all of them or else." Ominous. I guess I am not Pred-free after all. Who knew?

"Don't just complain... Be a Snarky Sarkie!" Click Here!

Read More of TheGardener's Journal Here.

By martzj
Posted January 22, 2009 at 9:48 pm
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Gardener, Gardener, Garndener.....

You Genius Boy you.......How am I to settle into a calming evening sleepytime routine if I'm rolling around the bed LMAO at your musings bespeckled with your clever artwork?

Prednisone.....when I lived alone I had to take an occassional pred to make severe hip and grating lumbar disk inflammation back off....No one to help but my teeny little prednisone tabs. Only rarely taken when sub-luxing shoulders awakened me from dead sleeps wondering if I had been shot. (Ehlers-Danlos)

Much Love to Swiffer...... : )
Jaynie

By shadowtoonces
Posted January 22, 2009 at 10:20 pm
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Amen. Amen. Amen. Enough said.

That is brilliant, like you said, it has it's place in medicine. But not for this kid. I am still so pissed about the miseducation from the medical community about "what really happens when you get off the pill from hell". I guess that's where I'm going to step in when I'm done sleeping 28 hours a day and catching my breath again from weaning. I'm a nurse and in the position to start change. Some would call it "raising awareness"..I call it "raising hell"..there is no excuse for not being forewarned of how bad it can be.....

As a nurse in the medical community, I will shamefully say that we have definatley dropped the ball on education with this issue......but I will proudly say that all it takes is one stubborn, determined nurse to get things going.......I would be cruel if I didn't.............take care and praying 4 us all..........Dawn

By Paradox
Posted January 23, 2009 at 5:16 am
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Heh, nice to always find a new TG journal entry - it always means a laugh while unwinding from work.
I think the whole Love the Pill/Hate the Pill message is the closest for me, but hey, I do educate patients about prednisone quite readily...

Prednisone is latin for evil in pill form

Prednisone causes severe mood swings, insatiable hunger, weight gain, insomnia, rage, acne.... it's like being 17 again without any of the good parts.

Weaning off prednisone is a harder time than starting it.

Truth is Prednisone is very good at what it does, and for some of the worst inflammatory diseases, and certainly lung diseases, there really isn't anything with as much efficacy as steroids. Seriously, in 100 years of treating lung diseases the only real change has been the method of delivery of the steroids.

As usual, TeeGee, you bring a spot of laughter and sunshine to one of those "would you like the frying pan or the fire" choices that is our disease. Thanks.

By daverojo77
Posted January 23, 2009 at 7:39 am
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"it's like being 17 again without any of the good parts"
LOL

TeeGee always a fan of your entries!

I gotta say I am one of the few who love "the stuff" I feel way better on prednisone than without it. I know the damage it can cause to my body which is why my doc is very careful and usually tries to keep me off preds if he could.

Keep em coming, as always a great read!

By SarcoidPrincess
Posted January 23, 2009 at 9:27 am
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Hey G! Thank you for this! Hopefully some non-sarcies will read this and maybe better understand! The other day I was taking my first round of pills for the day and my youngest (14 yrs old) was asking what's the name of that pill? What does it do? When I got to the prednisone she picked it up and said "this little pill causes all that bitchiness!". I had to laugh! I said come on now Mommy's gotten better! I'm weaning off and yesterday was the first day without a pill and I can feel my nodes swelling right now! This to shall pass! Sorry for the ramble:)

By Mani
Posted January 23, 2009 at 4:13 pm
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Gardner, you are truly brilliant!!!

As a sarky taking 50 mg daily, I can totally relate!!! I want off the drugs so bad, you have no idea, but frankly, right now, they are keeping my neurosarcoidosis in check, it's a MUST for me, until the Remicade comes through for me!! Beleive me, I hate looking like a Goodyear Blimp and feeling like I want to eat live chickens and behead the guy in front of me in line at the grocery store!! (beleive me, this could happen on Pred!) Today is a good day....I am grateful for the drugs that allow me to come to work, walk without falling, hug my boys and receive the best wet kisses from Harley my dog......

I'm Mani, I have neurosarcoidosis, take Prednisone and survive every single day and manage to smile......

By shadowtoonces
Posted January 23, 2009 at 10:04 pm
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Today is absolutley terrible....withdrawl from prednisone is not fun. I'm almost tempted to get back on it.......so depressed. Yesterday was alot better...When the hell is my adrenal gland gonna come back home and do it's job???...I also know I gotta double whammy with getting off pain pills the same time as prednisone...I don't know what is doing what tonight.....My shortness of breath is back and I'm trying not 2 be discouraged..I was told it was rebound by the lung doc....with the mood swings still on board, hopefully tomorrow it will swing to a good mood...UGHHHH...I hate this, I really, really, really, really, really, really do. Thanks for listening/reading my rant and take care...I cannot forget to pray........Good to see ya Paradox.............Dawn

By lkay
Posted January 23, 2009 at 11:17 pm
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Prednisone must be the topic of the day - I had it at work with a student who has Crohn's/Fibro and she hates it but knows it does help her.
Then over on the Ms board we keep chatting about the solumedrol treatments - IV steroids - used to treat symptoms. I still haven't look to see how close of a cousin it is to the pred - I need to do that before my neuro wants to juice me up with the stuff.

Thanks for the laughs as always!
Laura

By tnorthmountain
Posted January 28, 2009 at 8:09 am
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Do I understand the danger of prednisone which I took for 8 months because of Giant Cell Arteritis and Polymyalgia Rheumatica. First I was delirious because the pain went away, then I lost the ability to sleep, had to feed my body every two hours, lost my hair, dried my skin ect, ect. It is a horrible trip. But what topped it off was that my immunity was so severely compromised that I developed Micobactrium Avium Complex Infection in my lungs. It took a year of Antibiotics to recover from that. I feel very sorry for all of you being on prednisone. Take care and dont forget the Acidophillus tablets, they probably prevented my GI tract going berserk.

By JanetGrant
Posted January 29, 2009 at 5:29 am
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Heh... When you guys were 17, you spent all that fun time in your bedrooms, alone after school, unless like most high schools, you had a swinging Sally who dated all the boys in the senior class, at least once.

Paradox - You really need the Doctor T shirt. I would hedge a bet that TG had you in mind when he designed that one.

TG - As my spinal, hip, knee, calf, rib, neck and headache pains become more and more intense, after being MRI'd till I'm almost deaf, after finally scheduling a lumbar puncture that I intend to show up for, I am still on the same page as 42many. Vicodin is in, Prednisone is sin.

With my depression under control (for years now), I cannot even imagine what it would take to convince me to take one of those pills.

I, like you, recall a time when I was so sick & close to pneumonia, put on steroids for 10 days I think it was. It was a gradual daily elevation of the drug and then a taper off the drug. I was in my 20's and don't recall side effects but found the dosing to be strange.

Received my OW! T shirt today. I ordered the white, trimmed in black on collar and cuffs and I love it. I also received the Snarky Sharky bag which I will add to my collection of fabric grocery bags. Publix will see a lot of my new gear. Great quality, by the way.

Loved your post, as usual. Found this one to be pretty special as a matter of fact, the perfect blend of information, sarcasm, and humor. Thanks, we all needed that. Till later. Hugs... Janet

By gunneyrules
Posted November 14, 2009 at 5:10 pm
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as with my other post, woke up coughing again, it's been a month since my last flare up and a month before that. i'll have to go up from 40 to 60 mg have to call doc mon both sides hurting again,getting really bad at times. has anyone heard of a nerve block to control the pain. my husband keeps asking if i'm taking my cymbalta, it needs to be adjusted last week at the dr's ofc where i worked i had to apologize to the 4 of them, i was besdie myself, just wanted to cry. believe if it's wasn't necessary i wouldn't be living dr jeckyll and mr. hyde right now, with night sweats, and day sweats that come and go with shaking hands as i try to type even at work. God Bless Us All. My son has some antibiotics that were changed so I started taking them this morning, I can't be out of work. I managed to go grocering shopping today, but I am exhausted and have a huge abscess almost reaching my butt at least without the uti this time, abd i'm not going to the er like last time both were that bad ice for the uti and heat for the abscess and the ice melted almost instgantly for th uti pain wa show bad it got in only a few days, i knew the er crew and thet still aggravate me about it to this day. I am so tired today, here we go again, even sitting here typing this, gets me, guessed yet my sleep is affected, but if i tell my pulm doc he'll take me off and i'll end up in the hospital like four years ago and now i know why, the sarc, and thnaks for who posted about the bell palsy , i had bell's palsy when i was 17 after i graduated and was really sick lost weight,, couldn't sleep, couldn't close my eyes, they burnt, had to tape shut at night but would wake up staring at ceiling. this is the best thing that ever happened to me i can discuss things with you all that my family wouldn't understand.

Welcome to Inspire!

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