1. < Polymyalgia Rheumatica (PMR)

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 | @dadcue | 4 hours ago
In reply to @megz "The quickest way to increase cortisol levels is to have a devastating life experience that has..." + (show)
@megz

The quickest way to increase cortisol levels is to have a devastating life experience that has you on constant alert and unable to sleep. That will shoot up cortisol levels faster than most things. I don't think we're actually trying to increase cortisol so much as we're trying to reduce our body's dependence on more than we need to stay healthy. Taking prednisone makes our bodies reliant on an unnaturally high cortisone level, so we have to retrain it back to normal levels as we reduce the drug. That's my understanding.

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Cortisol is what the adrenals produce. The glucocorticoid that is nearly identical to cortisol is hydrocortisone; Cortisol and hydrocortisone are essentially the same molecule --- when referring to cortisol as a medication, it is called hydrocortisone. That was why my endocrinologist would have preferred that I switch from prednisone to hydrocortisone when my cortisol level was low.

Prednisone and other glucocorticoids are not the same as cortisol. They all have different properties and different molecular structures. They are all similar to cortisol though. When we take prednisone the body thinks there is cortisol in abundance so the adrenals stop producing cortisol.

Over time, the adrenals "forget" what their function is because there is more than enough prednisone present. When we taper our prednisone dose lower, that is when there isn't enough prednisone and no cortisol. The adrenals don't immediately produce cortisol again and only in spurts. The adrenals have to resume their full cortisol production or otherwise our inflammation levels go up again.

If PMR is still "active" our inflammation levels go up rapidly and we "flare" if we aren't taking enough prednisone OR the adrenals can't produce enough cortisol.

There is no way to encourage the adrenals to produce more cortisol again EXCEPT a very low dose of prednisone. If we take prednisone for "too long" the adrenals may never produce cortisol again. What is "too long" depends on the person I guess. Many years of Prednisone wasn't too long for me but my endocrinologist said I got very lucky.

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sw52 | @sw52 | 3 hours ago
In reply to @tiateacake "I am down to 4mg too. I did get some pains always in right hand and..." + (show)
@tiateacake

I am down to 4mg too. I did get some pains always in right hand and down right side. I used a compression glove for hand and snuggled under a quilt as the warmth seemed to ease the pain. Pains have all stopped now. I have noticed that I feel like my old self again and it does feel strange, In fact quite overwhelming. I went to the gym yesterday morning which left me feeling brilliant but later in day I was very restless, weather was really bad so a run would be a bad idea so went to the gym again. I felt better after that and very happy but did fall asleep on sofa for 2 hours. The other day when I realised my feeling were a bit up and down I told myself to do something I love but had not done for a long time. For me that was a very muddy uneven trail run with my dog, it worked and I felt back in control. It has been 10 months since I felt normal. Have a plan for when you don’t feel right, something that really makes you happy because I bet it all starts again when we are on 3mg.

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Thank you , you’re right about finding something that makes you happy which is difficult when one is feeling depressed .and fatigued. However, i forced myself to go for a walk today , which was painful and my legs felt heavy but my mood improved a bit .
I realised i have been looking to medication to cure me but need to change some things myself

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