Synacthen Test

Hello @spainishlady, It's good to have a rheumatologist that is proactive. You will notice we added a little to the title of your discussion to hopefully help members with experience join and share their experience. I was not familiar with the test but did find some information on the test itself.

-- Synacthen Test: https://patient.info/hormones/synacthen-test

Has your rheumatologist shared what other conditions they think you might have besides PMR?

Hi John , yes he believes many people are given the diagnoses too quickly and in an ideal world we should see a Rheumatologist in the first instant . He hasn’t ruled out PMR but he wants to make sure there is no underlying problem . He feels after 8 months I am now heavily Steroid dependant and wants to make sure my Adrenal glands are not completely destroyed .
If there is no response to the test he will take advice from the Endocrinologist.
I have a 15 year history of vague episodes of fatigue and achey body it’s possible , apparently , my Adrenals have been under par for many years . I am otherwise “very heathy “ all my bloods are within normal range. He has tested for all sorts of autoimmune issues.
Unfortunately this thing is not straight forward as we all know.

Since you mentioned you have a 15 year history of episodes of fatigue and more, have you seen the following discussions that talk about ME/CFS?

-- Chronic Illnesses of Millions of Women Left Untreated: https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/
-- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments:
https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

this is an ACTH stimulation test[probably expensive]..after this dose of steroids you are probably adrenal suppressed and should not abruptly stop steroids but do a very slow taper and they check cortisol levels

How long have you been on Prednisolone? Why isn't your rheumatologist convinced that you have PMR? How long have you taken Prednisolone such that you now might be steroid dependent?

My rheumatologist had all of the same concerns that your theumatologist has. When I was 10 mg of prednisone, I was referred to an endocrinologist to evaluate my adrenal function. The endocrinologist said she expected my adrenal function was suppressed but didn't know if I would end up being steroid dependent. Her guess was that I might need prednisone for the rest of my life. She said a synacthen test would be useless while I was still taking 10 mg of prednisone. The endocrinologist would only consider a synacthen test when I could maintain a prednisone dose of 3 mg.

The endocrinologist referred me back to my rheumatologist to determine whether or not PMR was still active. My endocrinologist asked my rheumatologist if I could somehow get down to 3 mg of prednisone.

A year elapsed before my PMR treatment was adjusted and I was able to manage my PMR symptoms with 3 mg of prednisone. At that time my rheumatologist referred me back to the endocrinologist.

I was prepared for a synacthen test. The endocrinologist didn't think a synacthen test would be necessary but wanted an a.m. cortisol level and ACTH level done instead as long as I could hold my prednisone dose for 48 hour.

My cortisol level was very low so I was told to stay at 3 mg of prednisone until my return appointment to the endocrinologist 3 months later. At that time, another a.m. cortisol level was done but not a synacthen test.

My endocrinolgist and I had a long discussion about stopping prednisone. I took prednisone to treat PMR for nearly 13 years before I was able to taper my dose down to 3 mg.

My endocrinologist said my cortisol level was still low but she felt that my adrenal function was "adequate." She explained what "could happen" if I stopped prednisone but also said that there would be no way to predict what "would happen." I was told that it "might be safe" to stop prednisone.

I eventually stopped prednisone and it turned out that I wasn't steroid dependent. The symptoms of adrenal insufficiency were mostly fatigue and some muscle and joint pain. My endocrinologist said I could take prednisone again if I ever felt the need. It was tempting to take prednisone again but I resisted. Slowly but surely after a year or so, my symptoms of adrenal insufficiency improved.

I should add that my rheumatologist still thinks that PMR is active. My current treatment isn't prednisone so my adrenals have recovered.

It is possible to have both PMR and adrenal insufficiency. I have never had the Synacthen test.

My husband has been told he will have this test when he reaches 5mg. He is currently at 5.5 & 6. Alternate days. His rheumatologist also is not convinced re PMR but tbh I think it is PMR. Apparently there is a less severe medication you can have once the adrenal gland kicks back in. It’s the steroids that stop the adrenal from working as the higher doses take over.

I got down to 2 mg methylpredisolone and then mild muscle pains returned.
Can cortisol deficiency present itself with exactly the same pain as PMR? How can you tell the difference?
To handle I have been upping to 4 mg and trying again to reduce. But keep getting stuck at 2 mg.
I went to endocrinologist a year ago due to extreme fatigue when I was at around 5mg. She would not do a blood test because I was on steroids. She wanted me to switch to hydrocortisone to help with taper but I was nervous to try as I didn’t want to mess with the progress I made on tapering so far. I found out my fatigue was due to a protein absorption problem which I corrected.
I wonder if I should go back to endocrinologist. I have been in steroids since Jan 2022. I wonder if low cortisol can feel like PMR. When I google it, I don’t have those symptoms.

Adrenal insufficiency is characterized by extreme fatigue and muscle aches similar to PMR.

Symptoms aren’t exactly the same as PMR. Then again, my symptoms on lower doses of prednisone weren’t exactly the same as I when I was originally diagnosed with PMR.

Higher doses of prednisone gave me high energy compared to extreme fatigue on low doses of prednisone.

Hello all - i thought of this conversation when i stumbled upon this paper "Is there a safe and effective way to wean patients off long-term glucocorticoids? " ( attatched)

I highlighted the following :
When discussing glucocorticoid taper- ing, patients should be counselled about the possibility of withdrawal symptoms. < I would say that my rheumatologist has NOT done this.

There are many mentions of PMR in this paper . But not any "steroid sparing " alternatives for PMR . I guess that was not the purpose of writing this .

Someone else posted this article not too long ago.
https://connect.mayoclinic.org/discussion/safe-dose-and-tapering-on-glucocorticoid-therapy/?pg=1#comment-1020760
I guess everyone was speechless or didn't know how to respond. My rheumatologist didn't seem very concerned about this potential problem.

I remember having a discussion about the subject with both my PCP and rheumatologist. They wanted to be helpful but they asked me what I wanted them to do. I was referred to an endocrinologist but the endocrinologist said there wasn't anything she could do until PMR was managed on 3 mg or less. The endocrinologist said a synacthen test wouldn't be reliable until then. However, she expected my adrenal function would be poor once I reached 3 mg because of long term prednisone use. She speculated that I might need a maintenance dose of corticosteroid for the rest of my life.

When Actemra prevented PMR flares, I was able to taper down to 3 mg. I was referred back to the endocrinologist. My cortisol level was low so I was instructed to stay on 3 mg for a long time. It took nearly an entire year to completely taper off prednisone. An a.m cortisol level was monitored. I never had a synachten test because my symptoms, long term prednisone use and low a.m. cortisol level all supported a diagnosis of adrenal insufficiency.

My adrenals eventually responded to lower doses of prednisone and my cortisol level improved. I was able to taper off prednisone but my symptoms of adrenal insufficiency didn't improve for another year while I stayed off prednisone.