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

Posted by DadCue @dadcue, Sep 16, 2024

https://www.nadf.us/secondary-adrenal-insufficiency.html
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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.

@dadcue

There are various ways to taper Prednisone by doing an alternating dose reduction. I don't know how successful they are but it should be discussed with your doctor. Some doctors believe doing it this way is beneficial. The following link talks about tapering with alternate day dosing.
https://www.verywellhealth.com/does-prednisone-tapering-minimize-withdrawal-190242
"When people first decrease the prednisone dose, it is common to feel achy or fatigued.4 These symptoms usually get better within two to seven days. If withdrawal symptoms continue beyond a week, talk to your healthcare provider.

Sometimes, your healthcare provider may temporarily increase the dose and taper more slowly. Even so, some people may still experience symptoms.

One way to deal with this is with a technique called alternate-day tapering. For example, instead of lowering the dose from 4 mg to 3 mg, for instance, a healthcare provider may prescribe 4 mg one day and 3 mg the next day, alternating back and forth for one week.

If that's successful, you may be prescribed 4 mg one day and 2 mg the next, and so on, until you are eventually alternating between 4 mg one day and no dose the next. The healthcare provider would then gradually taper the 4-mg dose".
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I think the theory is to not take Prednisone every day. On the day with no Prednisone that might give a nudge to the adrenals. When I was ready to get off Prednisone, I did a "countdown taper." I did 3 mg one day --- 2 mg the next day and 1 mg on the third day then zero for a day before going back to 3 mg for a couple days. I did that many times just to see how I would feel in preparation for stopping prednisone altogether.

When I felt ready, I did one final countdown and stopped taking Prednisone. I only did this after informing my endocrinologist. She said give it a try to see what happened. When my countdown tapers went well and my cortisol level was "adequate," my endocrinologist thought it might be safe to discontinue Prednisone. However, she told me to "restart Prednisone again for any reason if I felt the need." My countdown tapers gave me some degree of confidence that I could safely stop Prednisone. It worked for me. Prednisone was my security blanket after taking it for 13 years. I wasn't in a rush to give up prednisone but now I'm very happy to be off Prednisone. The added bonus was how many other medications were discontinued in the years after I stopped taking Prednisone. Getting off all my blood pressure medication, cholesterol medications and several more made me feel even better.

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I started seeing a new rheumatologist yesterday who I thought was great, and she wants me to start alternate day tapering (I am currently at 5). She feels it is a way to “trick” the adrenals into getting busy again. She didn’t object to .5 mg increments which I have been doing, just thought this is a better plan.

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@dadcue

There are various ways to taper Prednisone by doing an alternating dose reduction. I don't know how successful they are but it should be discussed with your doctor. Some doctors believe doing it this way is beneficial. The following link talks about tapering with alternate day dosing.
https://www.verywellhealth.com/does-prednisone-tapering-minimize-withdrawal-190242
"When people first decrease the prednisone dose, it is common to feel achy or fatigued.4 These symptoms usually get better within two to seven days. If withdrawal symptoms continue beyond a week, talk to your healthcare provider.

Sometimes, your healthcare provider may temporarily increase the dose and taper more slowly. Even so, some people may still experience symptoms.

One way to deal with this is with a technique called alternate-day tapering. For example, instead of lowering the dose from 4 mg to 3 mg, for instance, a healthcare provider may prescribe 4 mg one day and 3 mg the next day, alternating back and forth for one week.

If that's successful, you may be prescribed 4 mg one day and 2 mg the next, and so on, until you are eventually alternating between 4 mg one day and no dose the next. The healthcare provider would then gradually taper the 4-mg dose".
---------------------------
I think the theory is to not take Prednisone every day. On the day with no Prednisone that might give a nudge to the adrenals. When I was ready to get off Prednisone, I did a "countdown taper." I did 3 mg one day --- 2 mg the next day and 1 mg on the third day then zero for a day before going back to 3 mg for a couple days. I did that many times just to see how I would feel in preparation for stopping prednisone altogether.

When I felt ready, I did one final countdown and stopped taking Prednisone. I only did this after informing my endocrinologist. She said give it a try to see what happened. When my countdown tapers went well and my cortisol level was "adequate," my endocrinologist thought it might be safe to discontinue Prednisone. However, she told me to "restart Prednisone again for any reason if I felt the need." My countdown tapers gave me some degree of confidence that I could safely stop Prednisone. It worked for me. Prednisone was my security blanket after taking it for 13 years. I wasn't in a rush to give up prednisone but now I'm very happy to be off Prednisone. The added bonus was how many other medications were discontinued in the years after I stopped taking Prednisone. Getting off all my blood pressure medication, cholesterol medications and several more made me feel even better.

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Thank you so much. That was helpful. I noticed that you mentioned an endocrinologist? Not a rheumatologist? My rheumatologist is the absolute pits.
How do they measure your Cortisol? A blood test??

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@jenbillig

I have had tremendous difficulties going below 5mg. When you say you alternate what do you mean? One day 4mg and one day 3mg? Back and forth?? How long?

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The first time I attempted this taper I alternated 4 and 3 for 2 weeks and then just 4 for two weeks before alternating 4 and 3 for 2 weeks.
I could never get rid of the pain in the back of my upper legs and going up steps got extremely difficult.
I had started at 5mg feeling good, started alternating 5 and 4 and followed the plan the rheum gave me.
I started taking Tylenol for pain, obviously took too much because my ALT/AST liver enzymes elevated so I quit the Tylenol, stopped tapering and increased my prednisone a little.
I'm at 4 mg and starting to feel the leg pain but Dr does not think it is pmr. I had a consult appt with a 2nd rheum who ordered PT for gait/stability, gluteus medius tendinopathy and lower extremity weakness. I start PT in 2 weeks, am staying at 4 mg til then.
I have an Achilles problem which compromises my walking, just got foot orthotics.
I also have a BP problem. It's complicated. In a nutshell my low number at times is too low, in the 40's. I'm seeing my cardiologist next week.

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@pmrsuzie

The first time I attempted this taper I alternated 4 and 3 for 2 weeks and then just 4 for two weeks before alternating 4 and 3 for 2 weeks.
I could never get rid of the pain in the back of my upper legs and going up steps got extremely difficult.
I had started at 5mg feeling good, started alternating 5 and 4 and followed the plan the rheum gave me.
I started taking Tylenol for pain, obviously took too much because my ALT/AST liver enzymes elevated so I quit the Tylenol, stopped tapering and increased my prednisone a little.
I'm at 4 mg and starting to feel the leg pain but Dr does not think it is pmr. I had a consult appt with a 2nd rheum who ordered PT for gait/stability, gluteus medius tendinopathy and lower extremity weakness. I start PT in 2 weeks, am staying at 4 mg til then.
I have an Achilles problem which compromises my walking, just got foot orthotics.
I also have a BP problem. It's complicated. In a nutshell my low number at times is too low, in the 40's. I'm seeing my cardiologist next week.

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What’s BP?

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In reply to @jenbillig "What’s BP?" + (show)
@jenbillig

What’s BP?

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Blood Pressure
I have hypertension

REPLY

Ah! I am learning. Are you watching your diet??

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@jenbillig

Thank you so much. That was helpful. I noticed that you mentioned an endocrinologist? Not a rheumatologist? My rheumatologist is the absolute pits.
How do they measure your Cortisol? A blood test??

Jump to this post

Prednisone interacts with blood levels of cortisol so lab values that measure cortisol levels are meaningless unless your Prednisone dose is very low. An endocrinologist said there was nothing she could do unless I could maintain a 3 mg dose of Prednisone for an extended period of time without having to increase my dose.

I have read that some endocrinologists won't even consider checking a cortisol level unless you can be off Prednisone for a couple of days. My endocrinologist said 48 hours so that was when a morning 8 a.m. cortisol level was done. First I had to be able to stay on 3 mg of Prednisone. Second I couldn't take any Prednisone for 48 hours.

Time of day is critical because cortisol levels are variable throughout the day. A "morning 8 a.m. cortisol level" was done because cortisol levels are highest in the morning.
https://www.webmd.com/a-to-z-guides/cortisol-test
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There are other factors that need to be considered in order to correctly interpret cortisol levels. Since cortisol is the stress hormone even your level of stress needs to be considered. Not every doctor is qualified to interpret cortisol levels but an endocrinologist is your best bet. Correctly interpreting cortisol levels is an art because of all the factors that need to be considered. It is not a simple thing to do. The lab is a simple blood draw but interpreting the results is difficult.

My rheumatologist did a screening 8 a.m. cortisol level before referring me to an endocrinologist. An endocrinologist rechecked and verified my level but wasn't at all surprised that it was so low because I was on Prednisone for more than 12 years. The endocrinologist took over for my rheumatologist and gave me instructions about my Prednisone dose with the hope of getting me off Prednisone eventually.

There is an adrenal stimulating test called the Synacthen test that is more complicated. My endocrinologist didn't think it was needed unless I was completely off Prednisone and still symptomatic. My endocrinologist felt that a Synacthen test might decide if I needed to go back on Prednisone but it wouldn't be helpful in terms of getting me off Prednisone.
https://pathologytestsexplained.org.au/ptests-pro.php?q=Synacthen+short+test
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There weren't any promises made that I would be able to get off prednisone. There was some back and forth between the endocrinologist and rheumatologist to make sure I didn't need Prednisone for the treatment of my autoimmune conditions. Even my ophthalmologist got involved because I had a flare of uveitis after my first attempt to taper off Prednisone. I had to go back up to 60 mg of Prednisone after my first attempt to discontinue Prednisone.

There was a learning curve involved that took about 2 years for my doctors to find a way to get me off Prednisone. Much of it involved trying 2 different biologics to figure out what worked best for me.

Ultimately, my rheumatologist said it would be impossible to "optimally" treat all my autoimmune conditions. This was after my endocrinologist determined my cortisol level was "adequate." That was when I was given a choice between only one biologic or stay on Prednisone. I chose Actemra because it worked best for me compared to the other options. I have no regrets about the decision I made.

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@jenbillig

Ah! I am learning. Are you watching your diet??

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As best as I can, I'm following a diet plan incorporating low fat, anti-inflammation, and Meniere's/ vestibular migraine diets.
No caffeine, chocolate, alcohol, low/ no added salt is important.

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@pmrsuzie

As best as I can, I'm following a diet plan incorporating low fat, anti-inflammation, and Meniere's/ vestibular migraine diets.
No caffeine, chocolate, alcohol, low/ no added salt is important.

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"No caffeine, chocolate, alcohol, or low/ no added salt is important."

This would be a deal breaker for me. I will stick with doing the best I can.

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Well, 2 years ago I started having what has been diagnosed as Meniere's/ vestibular migraine episodes. They are debilitating. Been in the ER twice. I have not been able to pinpoint all the triggers. Am not risking having one of these episodes if it can be avoided.

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