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 | 1 day ago
In reply to @pmrsuzie "Well, 2 years ago I started having what has been diagnosed as Meniere's/ vestibular migraine episodes...." + (show)
@pmrsuzie

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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I understand. Meniere's/ vestibular migraine episodes are no fun.

I can relate to food triggers because of trigeminal neuralgia. I had to sneak food into my mouth. Sometimes I would get an electric shock just opening my mouth before putting any food into my mouth. I would be unable to eat too much anything for days at a time when those attacks were frequent.
https://www.wkhs.com/health-resources/wk-health-library/medical-procedures-tests-care-and-management/a-z/avoiding-trigeminal-neuralgia-triggers

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ctz25 | @ctz25 | 1 day ago

I am learning so much from this blog. I will be starting my 4th month on prednisone tapering from 15 to 10 to 9 and tomorrow to 8. My problem is that I am diabetic and I need very low carb to keep from spiking. In a month I will have my A1C checked but for now my rheumatologist suggests I stay on the prednisone tapering 1 mg each month. I have no PMR symptoms since starting prednisone. Has anyone with type 2 diabetes experienced better glucose control as they taper off the prednisone? That is what I am hoping will happen.

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dlc2025 | @dlc2025 | 5 hours ago
In reply to @pmrsuzie "After verifying that I could get 2.5 mg prednisone tablets at the pharmacy, I DID approach..." + (show)
@pmrsuzie

After verifying that I could get 2.5 mg prednisone tablets at the pharmacy, I DID approach my rheumatologist about half mg tapering at my visit last week. I got the same reply as before, " I don't do that". His reasoning is that alternating whole mg amounts every other day is the same thing. I am now at 4 mg and doing ok. I'm going to stay at 4mg until I start PT in 2 weeks before attempting to alternate 4mg with 3 mg. ( not getting 2.5 mg tablets).
I had a visit with a 2nd rheumatologist in Jan who ordered the P T.
The endocrinologist I had been seeing has retired so I am exploring that option to address cortisol issues.

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My rheumatologist does not want to do a cortisol test, is this unususal?
Trying to get into an endocrinologist.

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1 reply
DadCue | @dadcue | 4 hours ago
In reply to @dlc2025 "My rheumatologist does not want to do a cortisol test, is this unususal? Trying to get..." + (show)
@dlc2025

My rheumatologist does not want to do a cortisol test, is this unususal?
Trying to get into an endocrinologist.

Jump to this post

It isn't unusual for a rheumatologist not to order a cortisol lab test. This test is hard to interpret when you are still taking prednisone. Even my endocrinologist was reluctant to check my cortisol level until I could maintain a very low dose of Prednisone without needing to increase my dose to control PMR.

My endocrinologist said if I still needed prednsisone to control my autoimmune conditions there was no point in checking my cortisol level. When I said how long I had taken Prednisone, my endocrinologist "expected" my cortisol level to be low. My endocrinologist referred me back to my rheumatologist when I was still needed 10 mg of Prednisone.

A year later when PMR was controlled and I could maintain a 3 mg dose of Prednisone without having a flare my cortisol level was checked. Because I had symptoms of adrenal insufficiency an 8 a.m. morning cortisol level was checked by my rheumatologist. When my cortisol level was low my rheumatologist told me not to decease my Prednisone dose any lower and referred me back to the endocrinologist.

My endocrinologist rechecked my cortisol level and an ACTH level and verified that my cortisol level was low but said there wasn't much she could do. She told me to stay on 3 mg of Prednisone. She offered to switch me to hydrocortisone because she felt hydrocortisone would allow me to regain adrenal function better than Prednisone would. She said it would be okay to take Prednisone if I preferred.

I asked about an Synacthen test but my endocrinologist said it wasn't necessary unless I was still having symptoms when I was off Prednisone. She said a Synacthen test might be needed to determine if I needed to go back on prednisone if I still had symptoms when I wasn't taking any Prednisone.

After my cortisol level improved I was able to discontinue Prednisone but it took 6 months for my cortisol level to improve. Only then did my endocrinologist say "it might be safe to discontinue Prednisone." I never needed a Synacthen test.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6260064/

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