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I have been on Prednisone since 2010 for PMR. I have tried

to wean down three times...
I have been on Prednisone since 2010 for PMR. I have tried to wean down three times but the symptons return. I am now at 2 mg per day but for the last several weeks I have pain and stiffness throughout my whole body. My blood tests have been fine and my doctor says that 10% of people with PMR still have good blood tests. Now she wants me to take a blood test re my cortisole levels and she think that my system may now not be able to create my own because of prolonged Prednisone use.
Is it possible that I do not have PMR now? But that my immune system has got so used to Prednisone that it cannot function on its own now? If so, now what?
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Answered in 5 minutes by:
8/19/2013
Dr. David
Dr. David, Board Certified Physician
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Hello, this is Dr. David. I have read your question and I'm ready to help.

most likely you still have PMR if you still have pain and stiffness throughout your whole body.

it is not your immune system which has gotten use to the prednisone. the prednisone suppresses the immune system and keeps your PMR symptoms less.

but prolonged steroid use will supress your own body's ability to make steroids or cortisol. this is a normal issue. if you gave a normal person 3 years of prednisone, this suppresses their pituitary secretion of ACTH which is the hormone the pituitary tells the adrenal glands to make cortisol because there is already enough cortisol in your body from the 2mg of prednisone which is a very very low dose.

so your doctor is checking your or ACTH level and AM cortisol levels which might still be low, but that is normal since you are on 2mg of prednisone. if that dose works for you to help you suppress your PMR, then that is fine to continue. because between the 2mg of prednisone and the low amounts of cortisol your body is making, you most likely are having enough steroids and the right level for your body.

does this make sense?

do you have other questions?
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Customer reply replied 4 years ago

But the burning and aching sensations I have now are not the classic PMR symptoms i.e. shoulders to elbows and bottom to knee. These sensations are in my hands, feet, and calves too. Could the continued use of Prednisone cause these?

If I no longer have PMR, what are the chances of my body getting back to normal with making its own cortilsol.? If I do still have PMR, why has the pattern of discomfort changed in the last few weeks? What are the chances that I will have to stay on Prednison for the rest of my life?

most likely long term use of low doses of prednisone 2mg is not causing the burning and aching sensation of your hands feet and calves. these are still most likely from your PMR.

your body can make its own cortisol if you taper very slowly off of prednisone. most likely you are making some cortisol currently since the 2mg of prednisone is such a low dose. but your body will never make as much steroid as you would if you took extra steroids by mouth.

sometimes PMR pain can move around and change. this is the nature of the disease.

there are other immune suppressing drugs your doctor can try like methotrexate and others which can be used by themselves or with steroids.

also if you have been taking prednisone for such a long time, you have to take calcium and vitamin D supplements to help support your bones which can become weak from steroid therapy.
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