Prednisone cumulative dose in PMR

Posted by maye @maye, Jan 13 9:03pm

I’m wondering what cumulative dose of prednisone have my fellow PMR / GCA forum counterparts received from commencement of prednisone treatment to remission?

What would be an average cumulative dose?

And what would be considered a very high cumulative dose ?

Those who have received a high cumulative dose , what are your long term effects ( if any ) ??

And if minimal / or no effects what did you do to prevent /or treat long term effects?

I have GCA/PMR diagnosis since Nov 2024 and am forward planning to be as well as I can be ( just like all of us !) and would appreciate hearing about the lived experiences of the people in this forum .

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

What is most important are cumulative long term effects and being proactive
in anticipating ways to avoid the common problems. Mediterranean dietary
habits and exercise will help forestall metabolic problems and weight gain.
Learn to monitor your glucose at home monthly and have A1c testing twice
yearly. A baseline bone density is helpful in addition to vitamin D and calcium.
Have your home blood pressure cuff handy to check every 2 weeks.
Sleep and stress management are very important. Consider a cardiac risk
assessment for your systemic inflammation. Update your vaccination schedules and know your lab numbers. It is a good idea that you will know
your cumulative steroid dose and it can help you understand how to wean
off meds when it is time.

REPLY
@dadcue

It would be safe to say that my cumulative dose over my 13 years of PMR treatment with daily Prednisone was "massive." That doesn't count the prior 20 years of intermittent high doses of Prednisone to treat other autoimmune conditions.

I didn't have too many side effects during my 20 years of short term Prednisone use prior to PMR. I usually took 60-100 mg and tapered off again in a month or two. I had early onset and rapid cataract formation at the age 40 which was devastating to me at the time.

After PMR was diagnosed, my daily long term Prednisone use was approximately 30-40 mg for the first 5 years and 20-30 mg for the next 5 years.

A remarkable thing happened to me after 10 years of PMR. A person who experienced an adrenal crisis took me under her wing and explained a few things to me. She explained that many of my symptoms could be attributed to adrenal insufficiency caused by long term Prednisone use. She said it was imperative that I preserve whatever adrenal function I had left.

An amazing chain of events happened during my 10th to 12th years of PMR. I was able to have surgery on some "problem areas" and the corrective surgeries enabled me to taper down to 10 mg. Treatment with a biologic followed and I tapered down to 3 mg of Prednisone. I had to stay on 3 mg for six months in order to give my adrenals some time to recover. After my cortisol level improved and was deemed to be adequate as determined by an endocrinologist, I discontinued Prednisone.

I don't know how many side effects were caused by Prednisone. I just know my 13 years of daily Prednisone use were tumultuous and characterized by emergencies and hospitalizations.

While taking Prednisone daily, my medication list expanded to more than 10 other prescription medications. All of these medications were treating or preventing Prednisone side effects.

Currently I do a monthly infusion of the biologic and much lower doses of only two of my remaining prescription medications. The weight I gained while on Prednisone has been stubbornly resistant. I'm working on that side effect and I'm slowly making progress. At least I'm able to exercise again without having a flare and experiencing overwhelming fatigue.

I have been off Prednisone for 4 years. My overall health and quality of life have steadily improved since Prednisone was discontinued. I still have a prescription for Prednisone "as needed" but I never use it.

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DadCue, what a tumultuous health history you have!
Glad to hear side effects improved with the cessation of prednisone despite your “massive “ cumulative doses.
Hopefully you continue in better health from here on in.

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@jeff97

An interesting question occurred to me based on this post. I wonder how many people who have achieved remission actually stick around afterwards and keep posting on the forum. One of the biggest motivations for me to follow the forum is to learn about the diseases (PMR and GCA) and their treatments. I want to know what to expect, what the typical problems are, etc. Other motivations are to help other people and to feel less alone, since going through PMR and or GCA can be an isolating experience. So the motivation to be on the forum after remission would be a little different than before.

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All good points Jeff97
I’m thinking since PMR / GCA are chronic remitting diseases forum participants likely continue to check in , and or contribute , to this forum even if in remission.
As you say an ongoing motivation to help others with their experiences/ knowledge is a consideration too.

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@dadcue

It would be safe to say that my cumulative dose over my 13 years of PMR treatment with daily Prednisone was "massive." That doesn't count the prior 20 years of intermittent high doses of Prednisone to treat other autoimmune conditions.

I didn't have too many side effects during my 20 years of short term Prednisone use prior to PMR. I usually took 60-100 mg and tapered off again in a month or two. I had early onset and rapid cataract formation at the age 40 which was devastating to me at the time.

After PMR was diagnosed, my daily long term Prednisone use was approximately 30-40 mg for the first 5 years and 20-30 mg for the next 5 years.

A remarkable thing happened to me after 10 years of PMR. A person who experienced an adrenal crisis took me under her wing and explained a few things to me. She explained that many of my symptoms could be attributed to adrenal insufficiency caused by long term Prednisone use. She said it was imperative that I preserve whatever adrenal function I had left.

An amazing chain of events happened during my 10th to 12th years of PMR. I was able to have surgery on some "problem areas" and the corrective surgeries enabled me to taper down to 10 mg. Treatment with a biologic followed and I tapered down to 3 mg of Prednisone. I had to stay on 3 mg for six months in order to give my adrenals some time to recover. After my cortisol level improved and was deemed to be adequate as determined by an endocrinologist, I discontinued Prednisone.

I don't know how many side effects were caused by Prednisone. I just know my 13 years of daily Prednisone use were tumultuous and characterized by emergencies and hospitalizations.

While taking Prednisone daily, my medication list expanded to more than 10 other prescription medications. All of these medications were treating or preventing Prednisone side effects.

Currently I do a monthly infusion of the biologic and much lower doses of only two of my remaining prescription medications. The weight I gained while on Prednisone has been stubbornly resistant. I'm working on that side effect and I'm slowly making progress. At least I'm able to exercise again without having a flare and experiencing overwhelming fatigue.

I have been off Prednisone for 4 years. My overall health and quality of life have steadily improved since Prednisone was discontinued. I still have a prescription for Prednisone "as needed" but I never use it.

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Wonderful for you. Prednisone is such a help when needed but adds other problems after continued use.
Hoping to get off before the weight gain is a problem. Going from an active healthy person to daily pain is daunting.

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If you are not seeing an Endocrinologist, you need to be. Steroids are hormones and taking them long term like with PMR/GCA will have long term effects that your endocrinologist can help with keeping an eye out and head off problems before they take center stage. Also, my experience is that endocrinologists are slow to make changes - over correcting is something they need to avoid. My PMR ran my hypothyroidism off the rails. That is now within the happy zone, but not exactly where we want it - 5 year effort. I also have a couple of other problems she is working on. Slow and steady wins the race when it comes to Endos.

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@dadcue

It would be safe to say that my cumulative dose over my 13 years of PMR treatment with daily Prednisone was "massive." That doesn't count the prior 20 years of intermittent high doses of Prednisone to treat other autoimmune conditions.

I didn't have too many side effects during my 20 years of short term Prednisone use prior to PMR. I usually took 60-100 mg and tapered off again in a month or two. I had early onset and rapid cataract formation at the age 40 which was devastating to me at the time.

After PMR was diagnosed, my daily long term Prednisone use was approximately 30-40 mg for the first 5 years and 20-30 mg for the next 5 years.

A remarkable thing happened to me after 10 years of PMR. A person who experienced an adrenal crisis took me under her wing and explained a few things to me. She explained that many of my symptoms could be attributed to adrenal insufficiency caused by long term Prednisone use. She said it was imperative that I preserve whatever adrenal function I had left.

An amazing chain of events happened during my 10th to 12th years of PMR. I was able to have surgery on some "problem areas" and the corrective surgeries enabled me to taper down to 10 mg. Treatment with a biologic followed and I tapered down to 3 mg of Prednisone. I had to stay on 3 mg for six months in order to give my adrenals some time to recover. After my cortisol level improved and was deemed to be adequate as determined by an endocrinologist, I discontinued Prednisone.

I don't know how many side effects were caused by Prednisone. I just know my 13 years of daily Prednisone use were tumultuous and characterized by emergencies and hospitalizations.

While taking Prednisone daily, my medication list expanded to more than 10 other prescription medications. All of these medications were treating or preventing Prednisone side effects.

Currently I do a monthly infusion of the biologic and much lower doses of only two of my remaining prescription medications. The weight I gained while on Prednisone has been stubbornly resistant. I'm working on that side effect and I'm slowly making progress. At least I'm able to exercise again without having a flare and experiencing overwhelming fatigue.

I have been off Prednisone for 4 years. My overall health and quality of life have steadily improved since Prednisone was discontinued. I still have a prescription for Prednisone "as needed" but I never use it.

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Maybe I missed this, but how old are you? Wondering if some symptoms of mine are just because I am old, and also have PMR.

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@laurapmr

Maybe I missed this, but how old are you? Wondering if some symptoms of mine are just because I am old, and also have PMR.

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I'm currently 70 years old. PMR was diagnosed when I was 52. I took Prednisone for PMR every day for 13 years until I was 65 years old. At 65, a biologic called Actemra was tried and I tapered off prednisone in a year. I have now been completely off prednisone for 3 years.

PMR was not my first autoimmune diagnoses. My first diagnosis happened at the ripe age of 32 years old. That was when I got my first taste of prednisone. I still remember the bitter taste it left in my mouth. For my first autoimmune disorders, 60-100 mg of prednisone followed by a fast taper was routine for me until PMR was diagnosed. After PMR was diagnosed, I was on moderately high doses of prednisone daily until I was switched to the biologic.

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@dadcue

I'm currently 70 years old. PMR was diagnosed when I was 52. I took Prednisone for PMR every day for 13 years until I was 65 years old. At 65, a biologic called Actemra was tried and I tapered off prednisone in a year. I have now been completely off prednisone for 3 years.

PMR was not my first autoimmune diagnoses. My first diagnosis happened at the ripe age of 32 years old. That was when I got my first taste of prednisone. I still remember the bitter taste it left in my mouth. For my first autoimmune disorders, 60-100 mg of prednisone followed by a fast taper was routine for me until PMR was diagnosed. After PMR was diagnosed, I was on moderately high doses of prednisone daily until I was switched to the biologic.

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Dadcue, what a long history of needing Prednisone you have had .
Do you have any long term prednisone side effects?

The more recent advent of Actemera has clearly been a game changer for you and many others who have reported so on this forum.

Did you have any short or long term side effects from actemera ?

How long did you need to be on actemera ?

Im on Actemra weekly since time of diagnosis beginning Nov 2024 :
GCA ( large vessel involvement, no cranial or eyesight involvement & PMR )
In addition to Actemra I’m on a rapid 4mth pred reduction from 50mg .
Currently on 4mg .

So far i’m going really well.
I’m in a remission already demonstrated by both symptoms (complete lack of ) & low inflammation markers.
( from a CRP of 137!! )

I’m grateful to have Actema available at the time of my diagnosis, and feel hopeful it will reduce the need for greater prednisone cumulative dosages and subsequent long term side effects.

Wishing the least possible anti inflammatory medications for everyone here as we do a risk benefit’s analysis for treating our serious autoimmune diseases.

REPLY

You seem to be having a good response to Actemra too! I hope things continue to get better for you.

I'm still recovering from the long term side effects from prednisone. I'm not sure I can blame prednisone for everything. However, I'm still being seen by an endocrinologist for "metabolic syndrome." Originally, I was referred to an endocrinologist for adrenal insufficiency. My cortisol level improved after I was off of Prednisone for an extended period of time.
https://www.mayoclinic.org/diseases-conditions/metabolic-syndrome/symptoms-causes/syc-20351916
In addition to stopping Prednisone, at least 7 medications I used to take for my high BP, high cholesterol levels and blood sugar have all been discontinued. It seems I was on these medications because of prednisone side effects.

I had lens replacement surgery 30 years ago for cataracts at the age of 40. My artificial lens seem to be as good as the ones I was born with.

I'm still trying to lose weight and build back some muscles that have wasted away. I exercise a lot more than when PMR was treated with prednisone. I don't have the overwhelming fatigue I used to have.

2025 will be my 6th year on Actemra. I have mild side effects from Actemra like intermittent and mild neutropenia and elevated liver enzymes. Nothing too concerning according to my rheumatologist.

Actemra has been "interrupted" several times. The longest was 6 months during Covid when the supply chain was disrupted. The other times involved going as long as I could without Actemra. Every time my inflammation markers increased. I didn't have an acute flare but according to my rheumatologist, "I don't do as well" when I don't have a monthly infusion of Actemra. My rheumatologist says there is no reason for Actemra to be discontinued.

A synovial cyst formed on my lumbar spine while I was off Actemra. A neurosurgeon said synovial cysts form when inflammation is present. The body can reabsorb a synovial cyst when the inflammation is no longer present. My synovial cyst was reabsorbed after Actemra was restarted. Major back surgery was being planned when the synovial cyst formed but when it disappeared surgery was put on hold for the time being.

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Thanks for answering my questions re the side effects you have experienced from Pred & Actemera.
Sounds like it has been a lot for you to cope with. Luckily you dodged spinal surgery, for now as you say .

Glad to hear Actemra apparently works well for you , as it has done so far for me . I too am neutropenic , and some liver enzyme interference causing slight elevation In cholesterol ( not so concerning as my base line cholesterol was low anyway )

I’m a bit less than 3months into treatment and I appreciate treatment frequently doesn’t go to plan due to relapses. However feeling very well and hopeful right now.

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