Alternatives to prednisone?

Mike:
My immense intensity on the subject of prednisone/corticosteroid use and secondary adrenal insufficiency is because of the devestating effects both have had on my health and life.

Life will never be the same as I once knew it. My passion in directing to you to a endocrinologist with Pituitary speciality is in hoping to save you from my fate. Mine is not a coveted position. It is sad beyond belief.

I hear you in expressing a desire for relief from your pain . . . You would prefer death to unbearable pain. I share your sentiments. I am on Palliative Care with an explicit advanced directive. I am tired. Bone tired. No more medical interventions.

I had a near death experience when I suffered the intestinal perforation. The experience was transformative. I did not want to return to the world of the living. Wherever I was - a transitional space between Heaven and earth - was comforting and peaceful. God/Higher Power had other plans. I was given three directives, guidance for directing my life in returning to earth. There is not a day that I do not give through to the near death experience and the directives I was given by God/Higher Power. I have no fear of death. Loss of health has significantly eroded my quality of life. Care and comfort is the basis of my medical care.

The total body lain rhat accompanies adrenal insufficiency is owing to cortisol’s role as the body’s primary anti-inflammatory reagent. Cortisol is a life-essential hormone. Cortisol is needed at a cellular level by every cell in the body. Hormones are far more than estrogen and testosterone. Hormones, at their most basic, are highly influential chemical messengers that relay to the organs and body systems how they are to regulate and maintain function. Hormones are the operating software for the hardware that is the physical body.

The body is an large amalgamation of connective and soft tissue, bones and joints. Low or absent cortisol will be experienced as excruciating whole body pain because the body is, in large measure, connective and soft tissue,
bones and joints. I know and have experienced the pain of low/absent cortisol. And I sense that you know and have experienced the pain of low cortisol. It is all consuming pain. Death is contemplated simply as a means of desperation for relief.

Your consultation with an endocrinologist should include discussion of your pain. A Pituitary endocrinologist WILL understand the nature of your pain. I have never been denied pain control since diagnosis. Never. After years of being minimized by the clog-wheel mechanics of medical care, what I have experienced is much needed validation and humanity by medical providers.

Like you, I had no clear options other then corticosteroids to tame the inflictions of my body over the years that I took prednisolone. Prednisolone was my miracle drug. It was my golden elixir. For 15 + years, prednisolone and I were paired. But I was not prepared for the collateral damage that prednisolone left in its wake. My internal body has been ravaged by the effects of corticosteroids. I want to spare you my unfortunate state. My fate is that I want to spare you in consulting with a Pituitary endocrinologist and having a more mindful approach to your use of prednisone.

Corticosteroids are silently “eating away” at your internal body. Pac Man characters. My incomplete list:
A. Steroid induced type 2 diabetes, insulin dependent.
B. Expressive intestinal perforation, sepsis, permanent ileostomy (an ostomy pouch with poop that sits on my abdomen). My large intestine unzipped like the zipper of a rain jacket due to tissue thinning effects of steroids. I was hospitalized for 56 days.
C. Immune system suppression. A simple cold or flu “bug” can result in a hospital admissions. Steroids render the immune system weak and underpowered.
D. Avascular necrosis of my hips and jaw. Steroids cause tiny fat emboli, which can get “stuck” in the smaller vascular capillaries that nourish the hip and shoulder (in particular). Necrosis of bone ensues.
E. Osteoporosis. DEXA T score of 3 standard deviations from the mean. Vertebral compression fractures.
F. Steroid induced narrow angle glaucoma, loss of peripheral vision.

I will stop here. You get the drift. The collateral damage of long term corticosteroids does not make for an engaging life. My body is no longer my friend. Palliative Care does its best to keep me comfortable but cannot ease the reality of all that has been lost.

Your meeting with an endocrinologist should be done with an openness to help navigate your use of prednisone to balance quality of life in the present without undermining quality of life in the days to come. Be open about your pain and explicit that your pain be addressed as part of the plan of care. I think you will find much sensitivity to where you are and to your needs moving forward.
Karen

Spring:
Corticosteroid induced adrenal insufficiency is a life-altering condition and not one well understood by physicians. You will want to make sure that you are seeing an endocrinologist with HPA axis speciality (hypothalamus-Pituitary-adrenal). An endocrinology practice that is geared to metabolic or diabetes management will not serve you will. Take my words to hear here.

Diagnostic testing and lab work in assessing for secondary adrenal insufficiency, in itself, is part art and part science. Diagnosis is not as simple as looking at a lab value and arriving at a “yes” or “no” diagnosis. Pituitary hormone secretion of ACTH and subsequent cortisol secretion by the adrenal glands is not a constant or fixed level in the blood stream. Cortisol levels follow a bi-phasic Circadian pattern during a given 24 hour period as well as vary depending on experienced stressors. A blood draw at a given point in time is not a reliable value of Pituitary or adrenal gland competency. Diagnostic testing often involves dynamic stress testing of the HPA axis and often mucosal swabs testing over 24 hours.

The Pituitary gland cordinates the entire endocrine system. There are broad impacts on every body system when a Pituitary gland is struggling. You will generally feel “crappy” is you are suffering from adrenal insufficiency.

Prednisone has a biochemical equivalency to the body’s natural cortisol/hydrocortisone.

1 mg prednisone = 4 mg cortisol/hydrocortisone

A healthy person with an intact HPA axis produces about 25 mg-30 mg cortisol/hydrocortisone a day. This is a baseline cortisol for basic physiological survival.

As you lower the amount of oral prednisone that you are taking, your body will complain if your Pituitary and adrenal glands are not able to fully come back on-line and function. Your body will complain is you are not able to produce cortisol in the 25-30 mg per day range less the oral prednisone that you are taking.

For accurate testing, you will need to be free of exogenous/oral intake of prednisone for 36-48 hours. That is, no intake of oral prednisone for a minimum of 36-48 hours before a blood draw.

This is based on the half-life of prednisone that remains metabolically active when you take a dose. The half-life of prednisone is 12-16 hours. It takes 12-16 hours for the kidneys and liver to clear approximately half of an oral dose take at specific time “x.”

It is not true that you need to be taking less than 2 mg prednisone for diagnostic testing. That is inaccurate information. Any amount of oral prednisone will adversely affect blood lab testing results if taken within within 36-48 hours of the blood draw. Any oral prednisone would affect the blood lab value by showing a higher level of serum blood cortisol than actual being produced by the Pituitary/adrenal glands.

Cortisol levels will be compare to expected statistical values based on the time of day. Cortisol testing needs to be conducted between 7-8 am for accurate comparison. You need to be in a relaxed state of mind (avoid heavy traffic driving to the appointment) as stress affects cortisol levels.

Arriving at a diagnosis can be a daunting process. I went undiagnosed to where I fell into a coma . . . Not an ideal way to be diagnosed.

Feel free to contact me via my e-mail listed on my portfolio page as you go through possible testing. Proper interpretation of blood laboratory results is critical. And physicians can and do make mistakes in this area simply due to the fact that adrenal insufficiency is a rare disorder and not one that physicians encouter frequently.

Stay in touch with me by e-mail if this would help you,
Karen