Lupus and breaking long-term prednisone dependence

1/2 mg at a time…

If I were joining a twelve-step program, I suppose I would have to make my introduction by announcing “Hello, my name is L.A. and I am an addict.”  Although the statement causes anyone’s mind to run to illegal drugs, they are not the substance of my “addiction.”  I am medically and chemically dependent on the legal prescription medication prednisone that I take every day for my lupus.

I am an Addict

I have been an “addict” for fifteen years.   I have taken 5 or more milligrams of prednisone each morning for so long that my own adrenal function was suppressed.  It took so long to diagnose my lupus, and to finally begin treatment with high-powered steroid-sparing medications (methotrexate and azathiaprine) that my adrenal function was eventually suppressed.

Delicate Endocrine System
http://uvahealth.com/services/endocrine-system/conditions-treatments/179661

Any time this drug is supplied to the body from outside, the adrenal gland stops producing the equivalent of the normal 7.5 milligrams of hydrocortisone the body needs daily to survive.  After taking daily prednisone medication for as long as four or more weeks, the body becomes dependent on the prescribed prednisone.

The prescription artificially becomes part of the delicate interactive endocrine balance of essential and non-essential hormones produced by the adrenal, pituitary and hypothalamus glands.

Weaning by Small Steps

Sudden removal of prednisone can become life-threatening, so reduction of the dose must be done gradually to avoid adrenal insufficiency.  The longer the dependence has lasted, the slower the attempted withdrawal must be. Hopefully, as prednisone dose is incrementally decreased, the adrenal gland should begin to resume production of equally increasing amounts of natural hydrocortisone.  However, the adrenal gland won’t always turn on again.

Hydrocortisone Produced by Adrenal Cortex
http://bioserv.fiu.edu/~walterm/human_online/endocrine/endocrine_system.htm

Hydrocortisone is a natural hormone produced by the cortex (outer layers) of the adrenal gland.  Cortisol hormones are essential to life, and control many essential physical functions, including the body’s use of fats, proteins, and carbohydrates, suppressing inflammatory reactions in the body and affecting the immune system.

Unfortunately, sometimes after extended dependence on an external prednisone supply, a patient’s adrenal gland is unable to resume production.  The result can be irreversible steroid dependence, or described from a negative perspective — addiction.  Because of this, my doctor is duty-bound to once again try to lower my dose with a hopeful goal of stopping the drug altogether.

Only Time Will Tell

Only time will tell…

Whether mine is a reversible prednisone addiction, or an irreversible one, only time will tell.  My rheumatologist is the sponsor and instigator of everyone one of my attempts to break the prednisone dependence.  (I never suggest it.)  Taking Benlysta is part of that steroid-reduction program, one of the treatment goals of this expensive medication is to reduce the need for steroids.

Today’s infusion marked 23 months of receiving Benlysta for my lupus.

Now, it is time to try to take the next (somewhat dreaded) step.  I am the last remaining lupus patient in my rheumatologist’s medical practice that is receiving Benlysta, who is still taking daily prednisone.  When my doctor proposed his plan to cut my prednisone dose, I grudgingly agreed.

Dr. & Patient Negotiation

Promising to give it a try

I searched my doctor’s face, assertively asking, “Really, do you really think I can do it?  Will it really work?  It never has worked any other time in the past fifteen years.” Reminding him, I continued, “Every time we have tried, I’ve gone into a massive flare. I just don’t want to try it again!”

After I had completely finished my ranting, his emphatic reply was, “Yes, I do.”  I shook my head in disbelief again and looked down at my feet, as he continued to coax me toward accepting the challenge and give it an all-out try.

Promising to be compliant

Looking up at him again, and finally nodding in true agreement, I promised to be a compliant patient.  I agreed, but reminded him one last time of my complete lack of faith.  I would try, but I didn’t believe it would work.  I dreaded the certain flare that I simply knew would follow.

The Multistage Plan

Large supply of 1 mg prednisone tablets

Determined to give it a go, we negotiated an extremely slow plan to drop my daily prednisone dose in 1/2 milligram increments.  My doctor prescribed a large supply of 1 milligram tablets, and encouraged me to return in three months to report my progress.

I had only recently finished successfully dropping from 10 to 5 milligrams of daily prednisone over the previous few months.  Now, over the next few months the plan is to drop the daily dose by 1/2 milligram per month.  Only time will tell if it will work.