What steroid dosage did you start on? Did you find the right dosage?

Posted by abbeyc @abbeyc, Feb 5, 2022

Hello I am wondering what dosage of Prednisone everyone started on and how long (days) did it take to get complete 100% relief (if ever). Or how long did it take to find the right dosage? I have trialed 3 different steroid doses (with help from my doctors) for the past month and no success yet controlling all the pain 100% or determining the right dosage for me. Maybe I'm impatient.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@dadcue

All I know is taking the "proper dose" of Prednisone is very complicated!

Prednisone replaces the hormone cortisol which your adrenals produce. Your cortisol levels are variable during the day depending on many factors such as stress levels both physical and psychological, infections, and whether you are active or sedate. The amount of cortisol in your system is regulated. Cortisol levels are high when you need it and low when you don't need it. The body has a mechanism to regulate cortisol levels and it is called the HPA axis.
https://www.verywellhealth.com/hypothalamic-pituitary-adrenal-hpa-axis-5222557#:~:text=The%20hypothalamic%2Dpituitary%2Dadrenal%20(HPA)%20axis%20involves%20the,adrenal%20glands%20to%20release%20cortisol.
Prednisone overrides the HPA axis and takes this mechanism out of auto pilot. There is no such thing as a normal dose of prednisone because your body's need for cortisol is variable and depends on all the factors already mentioned.

The best you can do is to take enough prednisone to meet your body's needs. Your 5 mg dose of prednisone is called the physiological dose. It is enough for your "average days." It might not be enough for those days that aren't so average. That is why you have good days and not so good days. It is hard to predict what a day will be like so therefore it is hard to know how much Prednisone to take on any given day.

Approximate Prednisone Dose Ranges
Physiologic: 5mg (usual average adrenal output)
Supra-physiologic: 10-20mg
High supra-physiologic: 50-250mg (max adrenal output)

In the following link there is a table about Prednisone doses depending on the condition being treated. The overall Standard dosage for adults is anywhere between 5–60 mg per day depending on the condition and other factors.
https://www.singlecare.com/prescription/prednisone/dosage
The normal range for PMR is said to be somewhere between 5 -25 mg. Your 5 mg dose is in the lower range but generally you should take the lowest dose that is effective. It is better to let your doctor help you decide what prednisone dose to take. The patient is in charge of monitoring their symptoms and communicating to the doctor what those symptoms are. Anything else is called "self medicating" and that is frowned upon. However, self medicating happens all the time.

I wish you well and I hope things go well for you as you progress in your PMR journey. Everyone has a different journey so there is no "correct dose" of Prednisone. However, a "stable dose" is important because the body likes stability and maintaining homeostasis.

"Homeostasis is defined as a self-regulating process by which a living organism can maintain internal stability while adjusting to changing external conditions. Homeostasis is not static and unvarying; it is a dynamic process that can change internal conditions as required to survive external challenges."

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wow, this is soooo helpful!!! I understand much better now. thank you. This means of course I now have even more questions - feels quite complicated in terms of trying to self-manage.

Do most PMR patients work with a rheumatologist? Or a primary care? My primary care seems to want to pass me on to Rheumatology and I am waiting, could be several months.

So I think I understand that the variations that I'm experiencing are normal for this disease, which is why people self medicate (I've been tempted but prednisone scares me and I'm only two weeks in.) Frustrating! I love the quote about homeostasis; that is a great reminder, life is like this....thank you.

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@deborah57

wow, this is soooo helpful!!! I understand much better now. thank you. This means of course I now have even more questions - feels quite complicated in terms of trying to self-manage.

Do most PMR patients work with a rheumatologist? Or a primary care? My primary care seems to want to pass me on to Rheumatology and I am waiting, could be several months.

So I think I understand that the variations that I'm experiencing are normal for this disease, which is why people self medicate (I've been tempted but prednisone scares me and I'm only two weeks in.) Frustrating! I love the quote about homeostasis; that is a great reminder, life is like this....thank you.

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Hi @deborah57, If you aren't already keeping a daily log with your level of pain when you wake up in the morning along with your prednisone dosage for the day, you might consider starting one. It was recommended to me by my rheumatologist and it helped a lot when I was tapering down on the prednisone.

REPLY
@deborah57

wow, this is soooo helpful!!! I understand much better now. thank you. This means of course I now have even more questions - feels quite complicated in terms of trying to self-manage.

Do most PMR patients work with a rheumatologist? Or a primary care? My primary care seems to want to pass me on to Rheumatology and I am waiting, could be several months.

So I think I understand that the variations that I'm experiencing are normal for this disease, which is why people self medicate (I've been tempted but prednisone scares me and I'm only two weeks in.) Frustrating! I love the quote about homeostasis; that is a great reminder, life is like this....thank you.

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It depends where you live and how easy it is to be seen by a rheumatologist. I was treated by a rheumatologist when PMR was eventually diagnosed. I think seeing a rheumatologist is the norm in the United States but probably not the norm in the UK for example.

There are "straight forward cases" of PMR that a primary care doctor can probably manage. There are also "complicated cases" of PMR when a primary care doctor might not feel comfortable with managing so patients get referred to a rheumatologist.

I was referred to a rheumatologist when a primary care doctor "suspected" PMR. My primary care doctor prescribed some prednisone to me but didn't manage my symptoms because he assumed the rheumatologist would. I was mostly "self medicating" for 6 month while nobody knew what was going on.

It took two rheumatologists conferring with each other to reach the conclusion I had PMR. My diagnosis came after one rheumatologist requested that I stop taking prednisone in order to see what was going on. I complied and stopped prednisone for a few days but not without a lot of pain.

When PMR was diagnosed, my primary care doctor apologized to me for referring me to a rheumatologist. He thought it was PMR when he first laid eyes on me.

My PMR journey was complicated and lasted 12 years before I was able to taper off prednisone. I had multiple autoimmune disorders and multiple prednisone side effects. My quality of life was deteriorating the longer I took prednisone.

My PMR pain was managed well with prednisone by my rheumatologist. My prednisone side effects were mostly managed by my primary care doctor. When adrenal problems surfaced because of my long term prednisone use, an endocrinologist was useful. An endocrinologist told my rheumatologist that I needed to get off prednisone. Getting off prednisone was possible after my rheumatologist switched me to a different medication.

Don't be afraid of prednisone but have respect for prednisone. When prednisone is taken short term, people generally don't have too many problems. Long term prednisone for more than a couple of years while on higher doses can cause a plethora of problems.

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@deborah57

wow, this is soooo helpful!!! I understand much better now. thank you. This means of course I now have even more questions - feels quite complicated in terms of trying to self-manage.

Do most PMR patients work with a rheumatologist? Or a primary care? My primary care seems to want to pass me on to Rheumatology and I am waiting, could be several months.

So I think I understand that the variations that I'm experiencing are normal for this disease, which is why people self medicate (I've been tempted but prednisone scares me and I'm only two weeks in.) Frustrating! I love the quote about homeostasis; that is a great reminder, life is like this....thank you.

Jump to this post

"So I think I understand that the variations that I'm experiencing are normal for this disease, which is why people self medicate (I've been tempted but prednisone scares me and I'm only two weeks in.) Frustrating! I love the quote about homeostasis; that is a great reminder, life is like this....thank you."

You are a quick learner ... especially when you say that you have even more questions! I asked many questions but the current standard of care for PMR is to take prednisone. Unfortunately, there aren't many alternatives to prednisone.

Treatment with prednisone for PMR has stayed basically the same for more than 50 years. Fortunately, there is more PMR research being done. Treatment is beginning to change and the future looks more promising.

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@dadcue

"So I think I understand that the variations that I'm experiencing are normal for this disease, which is why people self medicate (I've been tempted but prednisone scares me and I'm only two weeks in.) Frustrating! I love the quote about homeostasis; that is a great reminder, life is like this....thank you."

You are a quick learner ... especially when you say that you have even more questions! I asked many questions but the current standard of care for PMR is to take prednisone. Unfortunately, there aren't many alternatives to prednisone.

Treatment with prednisone for PMR has stayed basically the same for more than 50 years. Fortunately, there is more PMR research being done. Treatment is beginning to change and the future looks more promising.

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Thank you for these insightful comments. I basically diagnosed myself (I'm a somatic educator with 30 years experience in the the field of bodywork) I knew my symptoms didn't fit any regular pattern of neuro-muscular dysregulation/dysfunction I was familiar with. Even with all my knowledge I had never heard of PMR. The bilateral shoulder pain/weakness was atypical and came out of nowhere. My bloodwork came back normal. But I responded to the Prednisone diagnostic taper immediately - like within hours, my pain disappeared.

Would you mind sharing what medication you took to take off the Prednisone? Do you still take it? Is your PMR gone? Your experience sounds complicated and enormously challenging. How is your quality of life now? If these are too personal to answer I understand.

"Don't be afraid of prednisone but have respect for prednisone." - Wonderful words of wisdom. Thanks for sharing your perspective. Grateful!

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@johnbishop

Hi @deborah57, If you aren't already keeping a daily log with your level of pain when you wake up in the morning along with your prednisone dosage for the day, you might consider starting one. It was recommended to me by my rheumatologist and it helped a lot when I was tapering down on the prednisone.

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Thank you! This has been recommended by others. I will start doing this.

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@deborah57

Hello,
I have started on 5 mg Prednisone about 2 weeks now while I wait to see a Rheumatologist. My Dr. said this dose is just to carry me over until then.
I am wondering how the proper dose of Pred is determined- I seem to have good days and not so good days, and I'm wondering if increasing the dose would be a good or a bad idea, and if the good/bad days are caused by other factors (diet, weather, etc) or is it just the nature of this disease that the pain increases/decreases? It's a little crazy making as I doubt feel very confident around making plans to do things, or I make plans and then I have to let them go because I'm just not up to it.
Any thoughts appreciated. Thank you so much.

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I was started on 10mg and did not find complete relief for a couple of weeks. After that I felt like superwoman and have not had a return of symptoms since. While tapering (now down to 4.5 mg), however, I quit feeling like superwoman and now feel my age which is 69. I am not a doctor, but it seems to me that the correct dose for PMR is the lowest dose that will completely relieve symptoms. If symptoms are not relieved in a couple of weeks, then either the dose is too low or the symptoms aren't caused by PMR. Many people claim to be symptom-free within a couple of hours. I was not and asked my rheumatologist for a higher dose. He said to be patient and he was right. Good luck! Let us know what yours says.

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@dadcue

All I know is taking the "proper dose" of Prednisone is very complicated!

Prednisone replaces the hormone cortisol which your adrenals produce. Your cortisol levels are variable during the day depending on many factors such as stress levels both physical and psychological, infections, and whether you are active or sedate. The amount of cortisol in your system is regulated. Cortisol levels are high when you need it and low when you don't need it. The body has a mechanism to regulate cortisol levels and it is called the HPA axis.
https://www.verywellhealth.com/hypothalamic-pituitary-adrenal-hpa-axis-5222557#:~:text=The%20hypothalamic%2Dpituitary%2Dadrenal%20(HPA)%20axis%20involves%20the,adrenal%20glands%20to%20release%20cortisol.
Prednisone overrides the HPA axis and takes this mechanism out of auto pilot. There is no such thing as a normal dose of prednisone because your body's need for cortisol is variable and depends on all the factors already mentioned.

The best you can do is to take enough prednisone to meet your body's needs. Your 5 mg dose of prednisone is called the physiological dose. It is enough for your "average days." It might not be enough for those days that aren't so average. That is why you have good days and not so good days. It is hard to predict what a day will be like so therefore it is hard to know how much Prednisone to take on any given day.

Approximate Prednisone Dose Ranges
Physiologic: 5mg (usual average adrenal output)
Supra-physiologic: 10-20mg
High supra-physiologic: 50-250mg (max adrenal output)

In the following link there is a table about Prednisone doses depending on the condition being treated. The overall Standard dosage for adults is anywhere between 5–60 mg per day depending on the condition and other factors.
https://www.singlecare.com/prescription/prednisone/dosage
The normal range for PMR is said to be somewhere between 5 -25 mg. Your 5 mg dose is in the lower range but generally you should take the lowest dose that is effective. It is better to let your doctor help you decide what prednisone dose to take. The patient is in charge of monitoring their symptoms and communicating to the doctor what those symptoms are. Anything else is called "self medicating" and that is frowned upon. However, self medicating happens all the time.

I wish you well and I hope things go well for you as you progress in your PMR journey. Everyone has a different journey so there is no "correct dose" of Prednisone. However, a "stable dose" is important because the body likes stability and maintaining homeostasis.

"Homeostasis is defined as a self-regulating process by which a living organism can maintain internal stability while adjusting to changing external conditions. Homeostasis is not static and unvarying; it is a dynamic process that can change internal conditions as required to survive external challenges."

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Good and complete post, Daddyo ! Wish more folks could read it. I see so many apparent self-medicators on here going in a convenient but incorrect direction on dosages and timing in order to eliminate any pain without being aware of the probable long-term costs.

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@dadcue

All I know is taking the "proper dose" of Prednisone is very complicated!

Prednisone replaces the hormone cortisol which your adrenals produce. Your cortisol levels are variable during the day depending on many factors such as stress levels both physical and psychological, infections, and whether you are active or sedate. The amount of cortisol in your system is regulated. Cortisol levels are high when you need it and low when you don't need it. The body has a mechanism to regulate cortisol levels and it is called the HPA axis.
https://www.verywellhealth.com/hypothalamic-pituitary-adrenal-hpa-axis-5222557#:~:text=The%20hypothalamic%2Dpituitary%2Dadrenal%20(HPA)%20axis%20involves%20the,adrenal%20glands%20to%20release%20cortisol.
Prednisone overrides the HPA axis and takes this mechanism out of auto pilot. There is no such thing as a normal dose of prednisone because your body's need for cortisol is variable and depends on all the factors already mentioned.

The best you can do is to take enough prednisone to meet your body's needs. Your 5 mg dose of prednisone is called the physiological dose. It is enough for your "average days." It might not be enough for those days that aren't so average. That is why you have good days and not so good days. It is hard to predict what a day will be like so therefore it is hard to know how much Prednisone to take on any given day.

Approximate Prednisone Dose Ranges
Physiologic: 5mg (usual average adrenal output)
Supra-physiologic: 10-20mg
High supra-physiologic: 50-250mg (max adrenal output)

In the following link there is a table about Prednisone doses depending on the condition being treated. The overall Standard dosage for adults is anywhere between 5–60 mg per day depending on the condition and other factors.
https://www.singlecare.com/prescription/prednisone/dosage
The normal range for PMR is said to be somewhere between 5 -25 mg. Your 5 mg dose is in the lower range but generally you should take the lowest dose that is effective. It is better to let your doctor help you decide what prednisone dose to take. The patient is in charge of monitoring their symptoms and communicating to the doctor what those symptoms are. Anything else is called "self medicating" and that is frowned upon. However, self medicating happens all the time.

I wish you well and I hope things go well for you as you progress in your PMR journey. Everyone has a different journey so there is no "correct dose" of Prednisone. However, a "stable dose" is important because the body likes stability and maintaining homeostasis.

"Homeostasis is defined as a self-regulating process by which a living organism can maintain internal stability while adjusting to changing external conditions. Homeostasis is not static and unvarying; it is a dynamic process that can change internal conditions as required to survive external challenges."

Jump to this post

Your posts should be the first thing people read when they come to this site. The Mayo Connect site in the US has a daily list of discussion threads and tapering schedules are always on that list. There is so much guesswork, confusion and distress around tapering. It can take weeks to get a Doctors appointment whether by phone or in person, leaving patients no choice, they either 'self medicate' or struggle to function through the day.
Perhaps the site admin could provide all new members with links to recommended reading ??

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That was a confused post by me, i thought i was in the Australian site where its not as well organised as the Mayo site !!! Sorry

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