1. < Polymyalgia Rheumatica (PMR)

If you have tapering problems below 5 mg this might explain why.

Posted by DadCue @dadcue, Sep 16 10:21pm

https://www.nadf.us/secondary-adrenal-insufficiency.html
----------------------
The following explains the challenges we need to overcome. I believe this is exactly what happened to me.

"The most difficult issue is that symptoms of adrenal insufficiency will be present during the tapering phase, because low levels of cortisol are the only trigger to the pituitary to stimulate the return of ACTH production and the restoration of normal pituitary-adrenal responsiveness.

The longer high dose steroids were given for a disease like asthma, rheumatoid arthritis, polymyalgia rheumatica or inflammatory bowel disease, the more likely that an individual will suffer from adrenal insufficiency symptoms on withdrawal of the steroids.

In addition, tapering off the steroids may cause a relapse of the disease that had been treated, causing a combination of disease symptoms overlapping with adrenal insufficiency symptoms. That is why it is very common for steroid tapers to be aborted, with a temporary return to therapeutic doses of glucocorticoids, followed by a slow attempt at tapering if the primary disease is in remission. "

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

hopeinal | @hopeinal | Sep 16 11:23pm

Well it may explain why I'm having no success tapering past 5.

REPLY
1 reply
DadCue | @dadcue | Sep 17 7:07am
In reply to @hopeinal "Well it may explain why I'm having no success tapering past 5." + (show)
@hopeinal

Well it may explain why I'm having no success tapering past 5.

Jump to this post

Sadly ... we are told to take prednisone for more than a year for PMR. Then the following happens ... I like to say we hit a brick wall over and over again when we attempt to taper prednisone too quickly.

"Recovery of the pituitary-adrenal response after use of a suppressive dose for more than one month will take about one month. Generally, this one for one recovery time is typical up to about 9 to 12 months, when recovery will often take up to a year or may not occur at all. "

We are told to taper off prednisone as fast as possible by the medical community. Forums like this and others promote an ultra slow taper. We receive conflicting advice because we can't do both. The dead slow nearly stop (DSNS) tapering method sends the wrong message and needs a new name in my opinion. Sometimes that slow of a taper is all we can do.

I discovered the biologic I take allowed me to taper my prednisone quickly and didn't suppress my adrenal function. My endocrinologist said if I could maintain a 3 mg dose of prednisone, it was low enough for my body to sense a low cortisol level. When I reached 3 mg of prednisone it was a "full stop" in my taper because my cortisol level was low. The hope was my adrenals would eventually recover and produce cortisol again.

My adrenals recovered but it took a long time. As long as my cortisol level was adequate and remained adequate, my endocrinologist said I could simply stop taking Prednisone if PMR was under control. She said I didn't need to taper Prednisone from 3 mg to zero when I had an adequate cortisol level. My biologic was controlling PMR so a flare didn't occur.
-----------------------
You can't expect your adrenals to work again at higher doses of Prednisone because of the following:

"... low levels of cortisol are the only trigger to the pituitary to stimulate the return of ACTH production and the restoration of normal pituitary-adrenal responsiveness."
----------------------------
The above was my personal experience and how I managed to get off Prednisone after trying for more than 12 years of PMR.

REPLY
4 replies
carolweso91 | @carolweso91 | Sep 17 9:28am
In reply to @dadcue "Sadly ... we are told to take prednisone for more than a year for PMR. Then..." + (show)
@dadcue

Sadly ... we are told to take prednisone for more than a year for PMR. Then the following happens ... I like to say we hit a brick wall over and over again when we attempt to taper prednisone too quickly.

"Recovery of the pituitary-adrenal response after use of a suppressive dose for more than one month will take about one month. Generally, this one for one recovery time is typical up to about 9 to 12 months, when recovery will often take up to a year or may not occur at all. "

We are told to taper off prednisone as fast as possible by the medical community. Forums like this and others promote an ultra slow taper. We receive conflicting advice because we can't do both. The dead slow nearly stop (DSNS) tapering method sends the wrong message and needs a new name in my opinion. Sometimes that slow of a taper is all we can do.

I discovered the biologic I take allowed me to taper my prednisone quickly and didn't suppress my adrenal function. My endocrinologist said if I could maintain a 3 mg dose of prednisone, it was low enough for my body to sense a low cortisol level. When I reached 3 mg of prednisone it was a "full stop" in my taper because my cortisol level was low. The hope was my adrenals would eventually recover and produce cortisol again.

My adrenals recovered but it took a long time. As long as my cortisol level was adequate and remained adequate, my endocrinologist said I could simply stop taking Prednisone if PMR was under control. She said I didn't need to taper Prednisone from 3 mg to zero when I had an adequate cortisol level. My biologic was controlling PMR so a flare didn't occur.
-----------------------
You can't expect your adrenals to work again at higher doses of Prednisone because of the following:

"... low levels of cortisol are the only trigger to the pituitary to stimulate the return of ACTH production and the restoration of normal pituitary-adrenal responsiveness."
----------------------------
The above was my personal experience and how I managed to get off Prednisone after trying for more than 12 years of PMR.

Jump to this post

What biologic were you taking?

REPLY
1 reply
DadCue | @dadcue | Sep 17 9:46am
In reply to @carolweso91 "What biologic were you taking?" + (show)
@carolweso91

What biologic were you taking?

Jump to this post

Actemra ... for PMR but it isn't FDA approved for PMR. Kevzara is FDA approved for PMR and should work the same way as Actemra does. There was no guarantee either biologic would work. My rheumatologis said after 12 years, Actemra was my "best chance" of ever getting off Prednisone.

My rheumatologist doesn't think PMR will ever go away at this stage. I have been on Actemra for more than 5 years. I don't have any symptoms of PMR as long as I get a monthly infusion of Actemra.

At least my cortisol level has improved. I don't experience the overwhelming fatigue anymore. I also don't have a PMR flare every time I overdo things, have an infection or when I'm stressed out for any reason.

Except for needing an Actemra infusion every month, I feel completely normal. I'm still recovering from everything that happened during 12 years of PMR and long term Prednisone use. Those years were characterized by one thing after another -- emergency room visits, hospitalizations ... everything under the sun.

The medical literature talks about a "steroid burden." Now I realize how much of a burden Prednisone was.

REPLY
1 reply
yogabonnie | @yogabonnie | Sep 18 8:01am
In reply to @dadcue "Sadly ... we are told to take prednisone for more than a year for PMR. Then..." + (show)
@dadcue

Sadly ... we are told to take prednisone for more than a year for PMR. Then the following happens ... I like to say we hit a brick wall over and over again when we attempt to taper prednisone too quickly.

"Recovery of the pituitary-adrenal response after use of a suppressive dose for more than one month will take about one month. Generally, this one for one recovery time is typical up to about 9 to 12 months, when recovery will often take up to a year or may not occur at all. "

We are told to taper off prednisone as fast as possible by the medical community. Forums like this and others promote an ultra slow taper. We receive conflicting advice because we can't do both. The dead slow nearly stop (DSNS) tapering method sends the wrong message and needs a new name in my opinion. Sometimes that slow of a taper is all we can do.

I discovered the biologic I take allowed me to taper my prednisone quickly and didn't suppress my adrenal function. My endocrinologist said if I could maintain a 3 mg dose of prednisone, it was low enough for my body to sense a low cortisol level. When I reached 3 mg of prednisone it was a "full stop" in my taper because my cortisol level was low. The hope was my adrenals would eventually recover and produce cortisol again.

My adrenals recovered but it took a long time. As long as my cortisol level was adequate and remained adequate, my endocrinologist said I could simply stop taking Prednisone if PMR was under control. She said I didn't need to taper Prednisone from 3 mg to zero when I had an adequate cortisol level. My biologic was controlling PMR so a flare didn't occur.
-----------------------
You can't expect your adrenals to work again at higher doses of Prednisone because of the following:

"... low levels of cortisol are the only trigger to the pituitary to stimulate the return of ACTH production and the restoration of normal pituitary-adrenal responsiveness."
----------------------------
The above was my personal experience and how I managed to get off Prednisone after trying for more than 12 years of PMR.

Jump to this post

oh my gosh. this is the most helpful comment I have read on any forum. I am 7 years on prednisone and really feel my PMR might be gone but every time I go lower than 2mg. I have pain everywhere. but it always feels slightly different than the original PMR. so I go to 1.5mg and suffer have stayed there 2 months before giving up and going back to 3mg. and dropping to 2mg. again and being fine. Have thought I might go on forever. Had one doc say that I had to get off and offered me sulfasalazine...which treats RA and Colitis. so I did not want it. what type of biologic did you take? thanks so much.

REPLY
1 reply
michik | @michik | Sep 18 10:18am

@dadcue Thank you for the link. It sure explains things very clearly. This PMR / Prednisone journey we are on is complicated, confusing, and discouraging at times (just to mention a few). It is so hard to sift through all the conflicting info that is out there, so any reliable information is very much appreciated. Wishing you all the best in your continuing recovery.

REPLY
DadCue | @dadcue | Sep 18 11:58am
In reply to @yogabonnie "oh my gosh. this is the most helpful comment I have read on any forum. I..." + (show)
@yogabonnie

oh my gosh. this is the most helpful comment I have read on any forum. I am 7 years on prednisone and really feel my PMR might be gone but every time I go lower than 2mg. I have pain everywhere. but it always feels slightly different than the original PMR. so I go to 1.5mg and suffer have stayed there 2 months before giving up and going back to 3mg. and dropping to 2mg. again and being fine. Have thought I might go on forever. Had one doc say that I had to get off and offered me sulfasalazine...which treats RA and Colitis. so I did not want it. what type of biologic did you take? thanks so much.

Jump to this post

There is no tapering strategy that has been researched that will allow you to taper off Prednisone successfully if your cortisol level is too low. If your doctor is thinking you might have RA and/or Colitis there are several biologics available to treat those conditions. Unfortunately, there aren't many biologics that are FDA approved for PMR. Only Kevzara is FDA approved to treat PMR.

At the time I was tried on a biologic 5 years ago there weren't any biologics that were FDA approved to treat PMR. My rheumatologist needed to seek approval for me to receive Actemra (tocilizumab). It was FDA approved for GCA but not PMR. My case was reviewed and the approval committee recommended that I be treated "as if I had GCA."

I actually have multiple autoimmune disorders. In my case, Actemra wasn't "optimal" for everything. I was able to try another biologic but it didn't seem to work for me as well as Actemra did. You need to try a biologic to know if it will work for you or not. It is still trial and error for the most part. My rheumatologist said he took an "educated guess" but didn't know Actemra would work for me before it was tried.

I have learned not listen to "internet experts" who said my doctors were ignorant. One self proclaimed internet expert said doctors in the USA were breaking the rules by treating patients with biologics.

I needed a consultation from an endocrinologist to finally be able to get off Prednisone because my cortisol level was simply too low. My endocrinolgist wasn't overly optimistic that I would ever be able to get off Prednisone because I was on Prednisone for 12 years.. The shocker was I didn't even need to taper my Prednisone dose from 3 mg to zero after my cortisol level improved. Don't try this on your own because it should only be done with medical supervision.

I was on Prednisone for 12 years so don't lose hope that you might be able to get off Prednisone eventually. I have now been free of Prednisone for close to 4 years. Actemra doesn't suppress my adrenal function and that has made a huge difference in how I feel.

Don't let anyone tell you Prednisone is the only or best option for treating PMR. My quality of life wasn't very good when I took Prednisone. Things have improved dramatically since I was able to discontinue Prednisone.

REPLY
abbeyc | @abbeyc | Sep 19 6:09am
In reply to @dadcue "Sadly ... we are told to take prednisone for more than a year for PMR. Then..." + (show)
@dadcue

Sadly ... we are told to take prednisone for more than a year for PMR. Then the following happens ... I like to say we hit a brick wall over and over again when we attempt to taper prednisone too quickly.

"Recovery of the pituitary-adrenal response after use of a suppressive dose for more than one month will take about one month. Generally, this one for one recovery time is typical up to about 9 to 12 months, when recovery will often take up to a year or may not occur at all. "

We are told to taper off prednisone as fast as possible by the medical community. Forums like this and others promote an ultra slow taper. We receive conflicting advice because we can't do both. The dead slow nearly stop (DSNS) tapering method sends the wrong message and needs a new name in my opinion. Sometimes that slow of a taper is all we can do.

I discovered the biologic I take allowed me to taper my prednisone quickly and didn't suppress my adrenal function. My endocrinologist said if I could maintain a 3 mg dose of prednisone, it was low enough for my body to sense a low cortisol level. When I reached 3 mg of prednisone it was a "full stop" in my taper because my cortisol level was low. The hope was my adrenals would eventually recover and produce cortisol again.

My adrenals recovered but it took a long time. As long as my cortisol level was adequate and remained adequate, my endocrinologist said I could simply stop taking Prednisone if PMR was under control. She said I didn't need to taper Prednisone from 3 mg to zero when I had an adequate cortisol level. My biologic was controlling PMR so a flare didn't occur.
-----------------------
You can't expect your adrenals to work again at higher doses of Prednisone because of the following:

"... low levels of cortisol are the only trigger to the pituitary to stimulate the return of ACTH production and the restoration of normal pituitary-adrenal responsiveness."
----------------------------
The above was my personal experience and how I managed to get off Prednisone after trying for more than 12 years of PMR.

Jump to this post

At 3mg. How were you able to go “full stop” off steroids if your adrenals weren’t working?
Sorry. I’m a bit confused on how you handled this. The fatigue and any flares

Also do you need to take the biologic for life ?

REPLY
1 reply
DadCue | @dadcue | Sep 19 6:44am
In reply to @abbeyc "At 3mg. How were you able to go “full stop” off steroids if your adrenals weren’t..." + (show)
@abbeyc

At 3mg. How were you able to go “full stop” off steroids if your adrenals weren’t working?
Sorry. I’m a bit confused on how you handled this. The fatigue and any flares

Also do you need to take the biologic for life ?

Jump to this post

Full stop and I stayed on 3 mg until my endocrinologist determined that "it might be safe to discontinue prednisone."

My cortisol level was low so I needed to stay on 3 mg until my cortisol level improved. My rheumatologist said I shouldn't attempt to taper my prednisone dose any lower than 3 mg until I was seen by an endocrinologist for a low cortisol level.

I'm off Prednisone but I might need to stay on the biologic for life. The biologic only got me off prednisone. My rheumatologist says I'm "better off" being on the biologic because of fewer side effects. I have to agree because I have no discernible side effects from the biologic I currently take. Prednisone caused me to have many additional problems from all the side effects.

I do a monthly infusion so my rheumatologist controls my dose of the biologic every month. I'm currently on the lowest recommended dose but I haven't been able to stop the biolgic. The longest I have gone between infusions was 7 weeks but my symptoms returned and my inflammation markers went back up.

Some people stop the biologic they take for PMR/GCA but I'm not one of those people ... yet. I have taken the biologic for 5 years for PMR. I was on prednisone for more than 12 years.

My rheumatologist doesn't think my autoimmune problems will ever go away because the immune system develops a "memory" for what it attacks. This is detrimental when my immune system is attacking me because my tissues will never go away like "foreign invaders" that the immune system attacks.

"Immunological memory also has its down side, which is a propensity to cause autoimmune disease. We have discussed autoimmunity in Chapter 13, but the contribution of memory cells has been given little emphasis. It is our opinion that without immune memory, there would be no autoimmune disease."
https://www.ncbi.nlm.nih.gov/books/NBK27087/
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I can't complain because the biologic works better than prednisone. I'm mostly symptom free except for arthritis. I have multiple autoimmune disorders that include both PMR and inflammatory arthritis.

My rheumatologist thinks it is important to stop autoimmune attacks quickly before an immune system memory forms. PMR is treated with long term Prednisone so PMR can persist for a long time in some cases. There weren't more effective treatment options for PMR until recently.

REPLY
abbeyc | @abbeyc | Sep 19 7:50am

Ah okay. I misunderstood ‘full stop’. I thought you meant you stopped taking steroids at 3mg.
Makes sense now

So you were able to get your adrenals tested while on steroids?
Endo I saw said she could not test my adrenals until I was completely off steroids which was very frustrating so I stopped going to her.

REPLY
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