Good morning, I was diagnosed with PMR nearly 3 years ago. Started on 15mg of Prednisalone as most people do but never managed to get below 4mg and only ever a lessening of symptoms. Rheumatologist ordered a 'sinactin' test (you are injected with a synthetic hormone that the pituitary gland secretes, which in turn stimulates the adrenal glands to release cortisol. My cortisol levels are not sufficient (adrenal insufficiency) so I'm now on Hydrocortisone 20mg daily. Endocrinologist said this was caused by the long term use of Prednisalone. Now I don't know if it's still the PMR that's causing the symptoms or the adrenal insufficiency. Have just been referred for a PET scan which is making me very nervous. Has anyone else experienced similar?
PET scan: Good morning, I was diagnosed with PMR... - PMRGCAuk
PET scan
Synacthen test - and at 4mg we wouldn’t normally expect your adrenals to show a lot of activity [they have been asleep whilst on higher doses of Pred, and now and need gently nudging int working again
Do you know what your readings were? What symptoms are you having?
See this - explains more fully about adrenals and steroid etc -
healthunlocked.com/pmrgcauk...
Others will be along with their experience of adrenals and PET-scan
As DorsetLady has said, it would be helpful to know what your symptoms are. Please tell us what concerns you about having a PET scan? We may well be able to allay any fears.
It was unlikely that you would show much adrenal activity if you are on 4mg of pred - it is plenty to suppress the production of cortisol by the adrenal glands and that is absolutely normal. It wasn't so much due to longterm use of pred as to the fact you are still on pred - as you reduce the pred dose further it almost always returns slowly.
I take it you are on 20mg hydrocortisone INSTEAD of pred not in addition to it?
The PET-CT scan is a fairly reliable way of seeing if there is inflammation in the characteristic places for PMR. It is an extended CT scan after being given an infusion into a vein of a tracer of radioactive glucose - a VERY low dose and quite safe. You get the infusion, wait a while for it to get throughout your body and then have the scan and then you can go home. I had one a few years ago - no problem at all.
Without knowing more details, the fact you say you have never been free of symptoms suggests to me you were never on enough pred to totally combat the inflammation and then you were told to reduce the dose - you have to control the inflammation first. And you aren't reducing relentlessly to zero - you are tapering (which is not the same thing) to identify the lowest effective dose. Unfortunately, too many doctors are terrified of using pred which in the UK is the only option for managing PMR, and many think it only last 2 or 3 years. It doesn't - it can last a lot longer. However, it is also possible that it isn't PMR but another rheumatological condition and the PET-CT should clear that up.
I thought that some people are never pain free though?
If taking steroids would this mask the results of the PET scan?
Yes, above 10mg it is pretty likely it will suppress the signal. But it is disputed and many doctors still use it on patients on pred though most do ask the patient to reduce it before the test. But it does still give results in some patients - I just suspect they are not as reliable as one would like and it is definitely a test best used before starting pred. Some hopes of that though!
Indeed. I ask, because I was on 12 1/2 mg of prednisolone when I had symptoms of GCA. Triggered a whole heap of investigations, but I had already been put on a higher dose of prednisolone as a precaution by the rheumatologist (40 mg). Hence, when I had all the raft of tests (temporal artery biopsy, MRI etc. ) I was up to my eyes on Pred. They gave me an urgent follow-up appointment for July!! Brought forward to April(next week). Hence, I’m interested in what they have to say. I thought it would be the case that the Pred would mask any results. I wonder why they did such an invasive test with the biopsy, knowing full well it’s unlikely to show anything, given the dose of steroids I was on. It seems madness!
How long had you been at 40mg? Some just don't think ... Though if they found something at that - they shouldn't argue. Alternatively - if they didn't find much, perhaps they want to stop the pred. We'll see,
Two weeks. To be honest she said I scored low on the GCA score and she put me on the 40 mg as a precaution. I felt so awful at 40 mg. I only tolerated it for two weeks and took it down myself. My rationale was that another rheumatologist might not have been so cautious as I had no further visual disturbances or pain after a one off episode and I think another rheumatologist might not have been so cautious and would’ve waited for the results before starting higher prednisolone. I just hope I didn’t make the wrong decision and don’t have to start again 🤦🏼♀️. But hey ho we make our choices . . .
I doubt it - depends on their experiences. One patient on the forum was seen at the ED and was about to start a steroid infusion but the doctor decided on oral pred instead and they could go home. They didn't say how important it was that the patient take the pred immediately, they waited for breakfast so as not to take pred on an empty stomach. They woke blind in one eye,
High dose pred is awful - being blind is worse.
OMG! How awful! You are so right about steroids being better than blindness. I will of course take them if needed.
I think it is not emphasised enough how narrow the line is between enough and not enough - and that is why they use such high doses. We do have a few on the forum with sight loss because of a missed diagnosis - DL amongst them.
Please do … as PMRpro’s says from experience I know all about sight loss -fortunately only one eye in my case, but others haven’t been so lucky.
Better a few side effects from (seemingly unnecessary) Pred than sight loss with GCA .. when you will actually still end up being on Pred. If it’s not GCA then you can reduce the Pred quite quickly.
So true. However, they started me on the high dose of in February, with no advice about how, or when to taper, with a follow-up appointment in July! They did bring it forward to April eventually though. I will see what they say this week go and will update you. One question, is normally unilateral, or are cases of bilateral
One question, is normally unilateral, or are cases of bilateral
Do you mean GCA symptoms in general or sight loss? This from AI is reasonably accurate- but not everyone is textbook -
Giant cell arteritis (GCA) symptoms can present as both unilateral (one-sided) and bilateral (both-sided) in various ways. Headaches, for instance, can be unilateral in the temporal area or more generalized and even bilateral. Similarly, visual disturbances, while often unilateral initially, can progress to bilateral if left untreated. Scalp tenderness, while often localized, can also be more widespread or even bilateral in some cases.
Here's a more detailed look at how GCA symptoms can manifest bilaterally:
Headaches:
While a classic temporal headache is unilateral, GCA can also cause headaches that are frontal, occipital, or generalized, potentially leading to bilateral pain.
Visual Disturbances:
While sudden, painless vision loss in one eye is common, GCA can cause bilateral vision loss if left untreated or if the inflammation affects both eyes.
Scalp Tenderness:
Scalp tenderness is a common symptom, and while it's often localized to the temples, it can also be more diffuse or even bilateral.
Polymyalgia Rheumatica:
GCA is often associated with polymyalgia rheumatica (PMR), which presents with bilateral stiffness and pain in the shoulders, neck, and hips.
Jaw Claudication:
Jaw claudication, or pain and fatigue in the jaw muscles during chewing, can also be bilateral, though unilateral presentations are more common.
Other Systemic Symptoms:
Systemic symptoms like fever, fatigue, and weight loss can be present on both sides of the body.
Temporal Artery Findings:
Temporal artery abnormalities, such as tenderness, thickening, or nodularity, can be found on one or both sides of the head.
Thank you. Very sobering 😳🥺
It is, and why we are always saying any possibility of GCA must be treated seriously - by all.
But good news, it can be treated successfully… and in the vast majority of cases.. it is.
PET scan is very straightforward as PMRpro described it. I dozed off during my scan. Take a good book as you spend a long time waiting for the tracer to circulate and attach to its target.
At 4mg my adrenal function wasn’t up to much but by 1.5mg they were much just by reducing Pred. It does seem to come up here that people’s doctors are pessimistic early on. Don’t give up yet. The trouble with hydrocortisone is that it isn’t as good with holding PMR inflammation as Pred, but it’s ok if PMR is quiet.
What symptoms are you getting?
PET was a piece of cake. I have a big issue with scanners and claustrophobia. Is it this kind of worry you have or some other aspect?
It wasn’t a PET but they injected me with some die to go through a scanner and it was actually such a lovely feeling I nearly dosed off ! Like you I was nervous
I had a PET-CT scan to diagnose my large vessel vasculitis. The CT scanner is less enclosed than an MRI scanner and I managed alright even though I'm claustrophobic. The scanner has to be kept cold, so wear warm clothes and keep your socks on!
You get to relax for an hour before the scan, while the radioactive glucose circulates round your body - you can't feel it 🤣!
The good thing is that you should get an answer about the state of any inflammation in your body.
Hope it goes well for you.
Ref to Tappo’s comments Because of a previous autoimmune illness when I started experiencing similar symptoms to before I was put on 30mg of Pred immediately. As CT and Ultrasounds done that day revealed nothing a PET scan was arranged together with a referral to rheumatology who then asked for me to stop the steroids immediately (only been taking for 6 days) and to delay the PET a few days so that I could have a clear week before the scan. Wasn’t aware of possible risks to my sight at that time so just trusted what rheumatology said. KT55 As Rugger says PET-CT is very straight forward so best to just relax, wear layers in case you get cold and follow the advice of drinking loads of water before hand. I’ve had two within 9 months of each other with no ill effects. A call from Rheumatology within two days of the last one confirmed GCA /LVV so immediately put on 60 mg Pred to work its magic. Hope you get sorted
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