"0" Level Cortisol - Prenisone High Dose

[JimO48]

My cortisol level tested "0" in recent years. I believe it has been "0" for several years. The ONLY way I continued to function was taking large doses of prednisone. I confessed this to several doctors over a period of years without an intelligent response. Two years ago,a young lady MD had the sense,or the good luck, to test my cortisol level. That revealed the "0"levels.

I have seen three endocrinologists trying to get off prednisone. The usual method of substituting hydrocortisone  has not worked for me. It acts like a poison instead of a medicine. It has none of the medical benefits of reducing pain, adding vitality. In a few days I sink into a mind numb,lethargic, depressed stupor with no ability to function normally.I tried substituting hydrocortisone three times and failed each time. I resorted to prednisone to return to a sense of normalcy.

I have rheumatoid arthritis and several surgeries, 4 spine, 1 ankle, 1 foot, 2 wrists. The last spine surgery, a multiple fusion,failed to fuse. I have only a few months to get it surgically fixed. I am scheduled for a knee replacement July 31st.
My current routine is to try to make the afternoon useful by taking enough pain meds and 22.5 mg of prednisone in the morning. That sort of works but one day with exercise (swimming laps) or physical work requires 1 or 2 days of recovery by sleeping to excess.

I have tried by force of will to overcome this situation many times but always humbled to accept the only way things that work.

I am about 60% handicapped in terms of a normal life. I am 66 years old. I was active, athletic and outdoorsy all my life. My employer of 10 years, eliminated my job, mostly due to my health problems.

Is there a way to get off prednisone other than substituting hydrocortisone ?
I see no chance for me to get off it with the present alternatives.

I have yet to meet a Dr who understands that prednisone dosage must be high enough to effect the basic symptoms of arthritis and provide a minimum of vitality. They all think 5 to 7.5 mg/day solves all requirements. Without a higher dose,the prevailing condition of life is just slightly valued above death.

Please tell me what I have missed. What else is a good alternative?

Stuck in the end groove.

Thanks for reading and considering this.

JimO

[rumpled]

Normally hydrocortisone would be the best replacement as you can mimic a normal body...

But in your case you have another disorder that being the rheumatoid arthritis. So the prednisone then serves two, not one, purposes and it is a better choice for you. It works for your anti-inflammatory needs and serves as your replacement.

HC simply has too short of a half life to help you.  Maybe after your surgery and you feel better, you may be able to reduce prednisone dosage but as long as you don't have steroid induced Cushing's, I would guess you are taking what your body is using.

5 is a replacement dose but fails utterly to take your whole health into consideration. I hope you can find a decent endo... Really that seems odd!