I think that we all suffered some adrenal insufficiency. Anything past 2 weeks the body quits producing cortisol. But as it pertains to your question , that would be your body failing to restart. From what I have read and others comments the length of time on steroids is largely responsible. I think if your body really does not restart it would be very difficult to function. This would then be diagnosed as Addison's disease. Addisons is considered very rare. Dadcue was on a twelve year battle but eventually restarted with the help of Actemra. It would be interesting to know if there are those that there body fails to restart. Most of the comments I see are those that find it much easier to stay on low dose than actually cant restart.
Thanks for your input. At this point I’m very frustrated and honestly don’t even trust my Endocrinologist’s advice and I’d like to go to Mayo but I’m 450 miles from the closest clinic.
I think that we all suffered some adrenal insufficiency. Anything past 2 weeks the body quits producing cortisol. But as it pertains to your question , that would be your body failing to restart. From what I have read and others comments the length of time on steroids is largely responsible. I think if your body really does not restart it would be very difficult to function. This would then be diagnosed as Addison's disease. Addisons is considered very rare. Dadcue was on a twelve year battle but eventually restarted with the help of Actemra. It would be interesting to know if there are those that there body fails to restart. Most of the comments I see are those that find it much easier to stay on low dose than actually cant restart.
I forgot to say I just started on Dupixent for my asthma and chronic sinusitis so I want to get off of prednisone but when I drop below 5 mg I have scary steroid withdrawal symptoms and my endo says there’s no way to know if I’ll go into an adrenal crisis.
PMR patients and anyone else treated with long term prednisone are at risk of Prednisone induced adrenal insufficiency. https://www.endocrine-abstracts.org/ea/0056/ea0056p44#:~:text=Conclusion%3A%20Our%20study%20suggests%20there,were%20not%20referred%20to%20endocrinology.
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The risk of adrenal insufficiency is greatest for patients on higher doses of prednisone and for longer durations of time. My endocrinologist "expected" that I would have adrenal insufficiency since I averaged 20 mg of prednisone for 12 years to treat PMR. The only question was whether or not my adrenal insufficiency would be permanent.
The percentage of patients with adrenal insufficiency decreases over time after cessation of prednisone. Only occasionally do some patients have permanent adrenal suppression.
My endocrinologist said stopping prednisone completely wasn't necessary to allow my adrenals to recover --- only a very low dose of prednisone was needed. If I couldn't maintain a prednisone dose of 3 mg or less for an extended period of time -- there wasn't anything she could do.
Actemra didn't have any effect on the adrenal glands. More importantly, Actemra didn't suppress my adrenal function. Actemra allowed me to taper my prednisone dose quickly down to 3 mg while controlling my PMR symptoms. When I was on 3 mg of prednisone, my cortisol level was low. I was told not to taper my prednisone dose any lower than 3 mg.
Actemra controlled my PMR symptoms so I didn't have to increase my prednisone dose. I personally had to wait 6 months until my cortisol level improved. When my cortisol level was "adequate" my endocrinologist said 3 mg was such a low dose ... I could discontinue prednisone without the need for a taper from 3 mg to zero. I tapered anyway ... but it only took me a few days to go from 3 mg to zero.
My endocrinologist wouldn't predict what would happen if I discontinued prednisone. She only said I could restart prednisone again for any reason if I felt the need. I had some lingering symptoms of adrenal insufficiency but those symptoms improved with time the longer I stayed off prednisone.
You can private message me if you wish. Generally speaking what your endocrinologist told you is the same thing that my endocrinologist told me. There isn't a scientifically proven way to taper off Prednisone after long term use. Other than what my doctors told me and my own personal experience ... I don't know much. The experts in the field don't know either but you can't blame them if nobody knows.
My "adequate" cortisol level was relative to my need for cortisol at that moment in time. There isn't a "normal cortisol level" because cortisol levels change throughout the day. Cortisol levels follow a circadian rhythm. A person’s cortisol level is generally higher in the early morning and lower late at night.
A person's need for cortisol changes depending on the day as well. Some studies suggest that the adrenals should be capable ramping up cortisol production up to 10 times baseline levels almost instantaneously during stressful situations when compared to more relaxed situations. Therefore, stress can dramatically increase your cortisol level.
I needed to be able to hold my prednisone dose for 48 hours when my a.m. cortisol level was done. Being on prednisone interfered with my body's ability to produce cortisol. My endocrinologist evaluated my symptoms of adrenal insufficiency while I was off prednisone for 48 hours in order to determine that my cortisol level was "adequate at that moment in time."
What my endocrinologist didn't know was whether or not my adrenals were able to produce enough cortisol if my stress level increased. The stress could be emotional stress or physical stress caused by an injury or an infection. That was why she made sure that I understood that I needed to take prednisone again for any reason if I felt the need after I discontinued prednisone.
Being on a biologic that controlled my PMR symptoms made it easier for me to separate my symptoms of adrenal insufficiency from PMR. I just kept telling myself that it wasn't PMR because Actemra had it under control. Anything else was more likely adrenal insufficiency while my cortisol level was low but I was never certain it wasn't PMR.
I have watched Dr Megan talk about the testing. While some think its important she stresses its not a reliable test. For one, the prednisone has the test messed up. And 2, as Dadcue mentioned, your requirement for adequate cortisol varies during the day and day to day. Your Endo and Dadcue pinned it saying they dont know for sure whether your body can produce enough.
You can private message me if you wish. Generally speaking what your endocrinologist told you is the same thing that my endocrinologist told me. There isn't a scientifically proven way to taper off Prednisone after long term use. Other than what my doctors told me and my own personal experience ... I don't know much. The experts in the field don't know either but you can't blame them if nobody knows.
My "adequate" cortisol level was relative to my need for cortisol at that moment in time. There isn't a "normal cortisol level" because cortisol levels change throughout the day. Cortisol levels follow a circadian rhythm. A person’s cortisol level is generally higher in the early morning and lower late at night.
A person's need for cortisol changes depending on the day as well. Some studies suggest that the adrenals should be capable ramping up cortisol production up to 10 times baseline levels almost instantaneously during stressful situations when compared to more relaxed situations. Therefore, stress can dramatically increase your cortisol level.
I needed to be able to hold my prednisone dose for 48 hours when my a.m. cortisol level was done. Being on prednisone interfered with my body's ability to produce cortisol. My endocrinologist evaluated my symptoms of adrenal insufficiency while I was off prednisone for 48 hours in order to determine that my cortisol level was "adequate at that moment in time."
What my endocrinologist didn't know was whether or not my adrenals were able to produce enough cortisol if my stress level increased. The stress could be emotional stress or physical stress caused by an injury or an infection. That was why she made sure that I understood that I needed to take prednisone again for any reason if I felt the need after I discontinued prednisone.
Being on a biologic that controlled my PMR symptoms made it easier for me to separate my symptoms of adrenal insufficiency from PMR. I just kept telling myself that it wasn't PMR because Actemra had it under control. Anything else was more likely adrenal insufficiency while my cortisol level was low but I was never certain it wasn't PMR.
I forgot to say I just started on Dupixent for my asthma and chronic sinusitis so I want to get off of prednisone but when I drop below 5 mg I have scary steroid withdrawal symptoms and my endo says there’s no way to know if I’ll go into an adrenal crisis.
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I think that we all suffered some adrenal insufficiency. Anything past 2 weeks the body quits producing cortisol. But as it pertains to your question , that would be your body failing to restart. From what I have read and others comments the length of time on steroids is largely responsible. I think if your body really does not restart it would be very difficult to function. This would then be diagnosed as Addison's disease. Addisons is considered very rare. Dadcue was on a twelve year battle but eventually restarted with the help of Actemra. It would be interesting to know if there are those that there body fails to restart. Most of the comments I see are those that find it much easier to stay on low dose than actually cant restart.
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3 ReactionsThanks for your input. At this point I’m very frustrated and honestly don’t even trust my Endocrinologist’s advice and I’d like to go to Mayo but I’m 450 miles from the closest clinic.
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2 ReactionsI forgot to say I just started on Dupixent for my asthma and chronic sinusitis so I want to get off of prednisone but when I drop below 5 mg I have scary steroid withdrawal symptoms and my endo says there’s no way to know if I’ll go into an adrenal crisis.
PMR patients and anyone else treated with long term prednisone are at risk of Prednisone induced adrenal insufficiency.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44#:~:text=Conclusion%3A%20Our%20study%20suggests%20there,were%20not%20referred%20to%20endocrinology.
---------------------------------
The risk of adrenal insufficiency is greatest for patients on higher doses of prednisone and for longer durations of time. My endocrinologist "expected" that I would have adrenal insufficiency since I averaged 20 mg of prednisone for 12 years to treat PMR. The only question was whether or not my adrenal insufficiency would be permanent.
The percentage of patients with adrenal insufficiency decreases over time after cessation of prednisone. Only occasionally do some patients have permanent adrenal suppression.
My endocrinologist said stopping prednisone completely wasn't necessary to allow my adrenals to recover --- only a very low dose of prednisone was needed. If I couldn't maintain a prednisone dose of 3 mg or less for an extended period of time -- there wasn't anything she could do.
Actemra didn't have any effect on the adrenal glands. More importantly, Actemra didn't suppress my adrenal function. Actemra allowed me to taper my prednisone dose quickly down to 3 mg while controlling my PMR symptoms. When I was on 3 mg of prednisone, my cortisol level was low. I was told not to taper my prednisone dose any lower than 3 mg.
Actemra controlled my PMR symptoms so I didn't have to increase my prednisone dose. I personally had to wait 6 months until my cortisol level improved. When my cortisol level was "adequate" my endocrinologist said 3 mg was such a low dose ... I could discontinue prednisone without the need for a taper from 3 mg to zero. I tapered anyway ... but it only took me a few days to go from 3 mg to zero.
My endocrinologist wouldn't predict what would happen if I discontinued prednisone. She only said I could restart prednisone again for any reason if I felt the need. I had some lingering symptoms of adrenal insufficiency but those symptoms improved with time the longer I stayed off prednisone.
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10 ReactionsMay I ask what your cortisol level was when it was considered “adequate “?
You can private message me if you wish. Generally speaking what your endocrinologist told you is the same thing that my endocrinologist told me. There isn't a scientifically proven way to taper off Prednisone after long term use. Other than what my doctors told me and my own personal experience ... I don't know much. The experts in the field don't know either but you can't blame them if nobody knows.
My "adequate" cortisol level was relative to my need for cortisol at that moment in time. There isn't a "normal cortisol level" because cortisol levels change throughout the day. Cortisol levels follow a circadian rhythm. A person’s cortisol level is generally higher in the early morning and lower late at night.
A person's need for cortisol changes depending on the day as well. Some studies suggest that the adrenals should be capable ramping up cortisol production up to 10 times baseline levels almost instantaneously during stressful situations when compared to more relaxed situations. Therefore, stress can dramatically increase your cortisol level.
I needed to be able to hold my prednisone dose for 48 hours when my a.m. cortisol level was done. Being on prednisone interfered with my body's ability to produce cortisol. My endocrinologist evaluated my symptoms of adrenal insufficiency while I was off prednisone for 48 hours in order to determine that my cortisol level was "adequate at that moment in time."
What my endocrinologist didn't know was whether or not my adrenals were able to produce enough cortisol if my stress level increased. The stress could be emotional stress or physical stress caused by an injury or an infection. That was why she made sure that I understood that I needed to take prednisone again for any reason if I felt the need after I discontinued prednisone.
Being on a biologic that controlled my PMR symptoms made it easier for me to separate my symptoms of adrenal insufficiency from PMR. I just kept telling myself that it wasn't PMR because Actemra had it under control. Anything else was more likely adrenal insufficiency while my cortisol level was low but I was never certain it wasn't PMR.
I hope this helps.
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3 ReactionsI have watched Dr Megan talk about the testing. While some think its important she stresses its not a reliable test. For one, the prednisone has the test messed up. And 2, as Dadcue mentioned, your requirement for adequate cortisol varies during the day and day to day. Your Endo and Dadcue pinned it saying they dont know for sure whether your body can produce enough.
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3 ReactionsThanks!
Read about DHEA and consider a trial if your doctor is not opposed.
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2 ReactionsWill check into it. Thanks