Gardener Symptom Series: Alien vs Prednisone

Gardener Symptom Series: Alien vs Prednisone

The following is part of the Gardener Symptom Series. I believe that Sarcoidosis is an inherited genetic disorder along the lines of other immune disorders, such as rheumatoid arthritis. I do not believe Sarcoidosis is the result of external triggers or pathogenic causes. I do not believe the severity or likelihood is based on race, environment, nation of origin, or habitual causes. Children, livestock, and people from at least 100 years ago suffered from Sarcoidosis, thus ruling out any modern, adult, or human habits. I believe the cure will be found in advanced gene therapy.

Because Sarcoidosis is a systemic disorder of the body’s own immune system, it may manifest as inflammation or granulomatous deposits anywhere in the body, at any time, interfering chemically or mechanically with any and all normal body functions. That is what I hope to document here, the wide variety of symptoms based on my own experience which is, of course, merely anecdotal.

Alien vs Prednisone—Sarcoidosis and Corticosteroids

First, you’re told you have Lymphoma. And that Lymphoma is a horrible cancer of the lymphatic system. And you might die soon. Then you are told, no, it’s actually something called Sarcoidosis. And that Sarcoidosis is a self-limiting disorder that is not cancer, so be thankful. Oh, and by the way, you might die soon—maybe. And then you are told to take Prednisone. And that Prednisone may or may not work, and comes with its own grim laundry list of known side effects. And after a while, you will want to die soon.

The above is usually the rule rather than the exception with a person’s first diagnosis with Sarcoidosis. And I could not write a series on Sarcoidosis symptoms without mentioning that one of the top causes of symptoms is one of the most common treatments: corticosteroids. And two of the most common brand names are Prednisone and Prednisolone.

Here's a quick review of what Preds are and how they relate to Sarcoidosis; made really super-simple-for-theGardener’s-second-grade-Fisher-Price-brain: Sarcoidosis is painful, debilitating inflammation and granuloma formation from a whacked-out immune system stuck in over-drive. Corticosteroids, like Prednisone, suppress the immune system and thereby, in theory, suppress Sarcoidosis symptoms. Sounds good, right? Unfortunately that last part does not always apply, but it does suppress the immune system, opening the patient up to a whole new set of problems and nasty side affects, which, if you listen to Prednisone users, may be worse than the Sarcoidosis itself.

When doctors are first confronted with their own ignorance regarding Sarcoidosis, they often default to the age-old course of action described in the dusty Merck manual on the shelf, and prescribe Prednisone without a second thought as to whether it is actually warranted. Because when you are a physician billing health insurance $400 a visit, one must keep up appearances and anything is better than putting a finger aside your lip and uttering “duh.”

The down side to this particular brand of doctorly hubris is that Prednisone is more akin to the fire than the frying pan. Fortunately for me, I was well-read on the subject before I met with my beloved Dr. Do-Very-Little and told him “no thanks” when he tried to give me the Prednisone-Send-Off. With a little research on the part of the Sarcoidosis sufferer, one will read that:

1.) Sarcoidosis is incurable.

2.) Sarcoidosis is not understood and its symptoms are unpredictable

3.) In many cases Sarcoidosis symptoms may resolve after a time (36 months average.)

4.) Prednisone is very understood and its symptoms are predictable.

5.) Prednisone may or may not have an effect on lessening Sarcoidosis symptoms.

I chose to go the path of “let’s see what happens without popping little pills of evil incarnate.” And I’m glad I did.

I have had some really nasty bouts of severe Sarcoidosis symptoms after my “official diagnosis” but they all seemed to wax and wane, and thankfully, today, I’m relatively just about as right-as-rain. The lungs issues were the worst, and the fear of things getting worse almost sent me pale to the doctor, hat in hand. But I didn’t. I waited it out. And I got better without anything so much as a measly aspirin.

Now that makes me wonder; what if I did get on the cortico-bandwagon and started popping those jagged little pills and then my lungs got better. Would it have been the Preds? Or would it have been the wait? Good question. But I gosh-darned guarantee if I took the Preds my lungs might be better, but I’m not so sure about the rest of me.

From where I sit here, reading oodles and oodles of postings and emails and testimonies of every sort, the conclusion I have come to is that those on Prednisone cannot tell what symptom is from Sarc and what is from Preds. Alien or Pred-ator. Many times the symptoms that a person is complaining about and blaming on Prednisone, is the exact same symptom I had from simply having Sarc. This tells me two things: The Prednisone is not working for them, and they could have dealt with the symptoms all along without the dangers of Prednisone.

Here is that pleasant laundry list of ‘possible’ side effects that Prednisone may cause:

Headache, dizziness, difficulty falling asleep or staying asleep, inappropriate happiness, extreme changes in mood, changes in personality, bulging eyes, acne, thin, fragile skin, red or purple blotches or lines under the skin, slowed healing of cuts and bruises, increased hair growth, changes in the way fat is spread around the body, extreme tiredness, weak muscles, irregular or absent menstrual periods, decreased sexual desire, heartburn, increased sweating, vision problems, eye pain, redness, or tearing, sore throat, fever, chills, cough, or other signs of infection, seizures, depression, loss of contact with reality, confusion, muscle twitching or tightening, shaking of the hands that you cannot control, numbness, burning, or tingling in the face, arms, legs, feet, or hands, upset stomach, vomiting, lightheadedness, irregular heartbeat, sudden weight gain , shortness of breath, especially during the night ,dry, hacking cough, swelling or pain in the stomach swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs, difficulty breathing or swallowing, rash, hives, itching, may slow growth and development in children, may increase the risk that you will develop osteoporosis. Some patients who took Prednisone or similar medications developed a type of cancer called Kaposi's sarcoma.

Wow. Rest assured, my list of Sarcoidosis complaints was never that long. And if you’ve noticed, many of the above possible side effects are exactly the same as those caused by Sarcoidosis; a true no win – no win situation.

Famous Sarcoidosis starlet and Prednisone victim, Karen Duffy, tells the tale of a date gone wrong. Her eager suitor arrived at her door expecting a lithe young Vee-Jay, but instead was greeted by a bloated woman with a Prednisone induced moustache. Corticosteroids are an equal opportunity disaster.

Now, I am NOT against the use of Prednisone, any corticosteroids, or powerful drugs for that matter, but I am against the default prescribing of such things without patient/doctor education and a willingness to wait-and-see if symptoms are manageable and if the patient can learn to live with some discomforts. But many patients are themselves to blame, thinking that doctors have all the answers, and they indirectly demand to be treated immediately for their discomfort. A doctor will usually comply... with corticosteroids.

There are many cases where corticosteroids are indeed a necessary evil, such as when the Grim Reaper is holding court and emergency measures need be taken; severe cases of advanced lung dysfunction, heart infestation, nerve and brain impediment, and your precious eyes. These powerful drugs can save lives and vision, but they also have the potential to do serious harm; it is not a flip decision to accept or ask for Prednisone therapy. It must be an informed decision by both doctor and patient; agreeing equally to a course of action—or no action.

The following are true testimonials about Prednisone and corticosteroid use from actual Sarcoidosis sufferers; brave souls all:

Page—60 mgs a day—“Its rough on the already hurting joints, makes you swell in areas that are not pretty or comfortable and it just kind of adds to the already sick/flu like sypmtoms. Its rough stuff.”

Phaedra—50 mgs a day—“I hate it. What is the point of a treatment that makes you feel worse?”

Rachel—20 mgs a day, tapered to 0 over 367 days—“Like towing a trailer through the mountains, it's not starting that's the problem, it's stopping at the bottom.”

Briand—60 mgs a day, tapered to 15 mgs a day—“Made a difference, my heart didn't race. I feel a little better. Cons: Causes massive hunger, nervousness, insomnia, anger. Pros: Cleared up my achy joints, lowered my calcium count, lowered my kidney function numbers, enhanced my eyesight.”

Kimberly— 40 mgs a day, tapered to 5 mgs—“I had a horrible throat/sinus infection, headaches and back pains the entire 3 months.”

Scmom23—40 mgs a day tapered to 5 mgs (10mg during flares) over five years—“I have not been able to taper to zero as Sarc symptoms come back in force when I try to go below 5 mgs. I did lose the 45 lbs I gained at the high doses, but still cannot workout like the old days. I'm just really tired all the time, but at least I don't feel the need to eat a whole cow everyday!”

Jill—135 mgs a day with a slow taper—“It has been two weeks now. I am in pure hell! The shakes, mood swings, no sleep, and the bone/joint pain is becoming intolerable. All I can say is that it better work or this pain will be for nothing! I have never been on anything this awful in my entire life.”

Bunkie—60 mgs a day with a taper 0—“I’m back up to 40 mgs a day and still tapering. Brittle bones, mouth sores, gum issues, hair loss, bad dreams, nervousness, crazy yeast, eating every three hours or dizzy, hot flashes, funny spots on skin, loss of padding on feet and multiple chemical sensitivity. No diabetes yet.”

Melissa_e—10 mgs at diagnosis—“Made me sicker than I was, I think. Tapered off and started Plaquenil. Can't really tell what that's doing but still in a lot of pain. New rheumatologist talked me into going back on 5 mgs of Prednisone six weeks ago. It has helped my joint pain with no side effects, yet.”

Lauren—10mgs a day, up to 78 mgs a day—“Cons: Complete adrenal shut-down! Cushings Syndrome (Moon face, large stomach, hump on upper back), Addison’s Disease, fractured spine, cataract's on both eyes (which left me blind for one year), fourteen stomach ulcers, 110 pound weight gain in six months, acne, and a depression so severe that I checked myself into a mental health center. After I found myself in a group circle bouncing a beach ball for a half-hour, I checked myself out, went home, and grabbed my own beach ball, and went to the beach. Pros: None.”

Ruth—60 mgs a day, tapered to 5 mgs and back up to 10 mgs—“Twenty months later I seem to breathe better, but gained nearly 80 lbs, lung function has decreased, aches and pains are bad. Hard to tell what is Sarc and what is side effect. First doctor wanted to avoid. I can understand why!”

Nasus—40 mgs a day, tapered to 20 mgs—“I felt horrible before the Pred and I still feel horrible after. I agree, it’s hard to tell what’s Pred related & what’s Sarc related. So all I can go on are the symptoms I had before the Pred. Many more symptoms now but I do have one pro... my chest pains have gotten a lot better. I don't like the drug at all!”

Cora42—80 mgs twice a day—“Gained 40 lbs in six weeks; moon face, hump in back, insomnia, sweats, mood swings, etc. The worst of the effects I had was that one day I decided I was going to drive my car into a tree. I don't know where the urge came from and I didn't care, thankfully I came to my senses in time. I called the doctor immediately and was taken off the drug ASAP. Doctor’s diagnosis was that it was caused by mental stress (ya think)!”

Yikes.

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

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