Short synacthen test

[Carrollee]

I had this test back in April On 5mg. Only got report back today (3 months later) and need some advice please. (Pmr/GCA 4yrs) My baseline was 343 but only rose to 383 (1/2hr & 1hr). Consultants ( rheumatology) letter to doc says to take me off steroids and put on hydrocortisone. Is this usual. Nervous of coming off pred as have some stiffness in lower body and not sure of hydrocortisone. They want to repeat the test soon. I guess doc will phone me to discuss once he gets it on Monday. Am exhausted most of time and crash quickly. Thanks in advance cc 🤗

[PMRpro Ambassador]

Hydrocortisone is also a corticosteroid but with a much shorter half life so its antiinflammatory effect is much shorter. That also means that it allows the adrenal glands to be prodded into life better and is the reason why you need it 2 or even 3 times daily if it is also to manage the PMR if it is still active.

One lady on the forum was put on hydrocortisone as her adrenal function is nil - but she had adverse effects that she couldn't live with so was put back onto pred. Others (not many) manage their PMR with hydrocortisone anyway because of problems with pred. It really is a case of try it and see what happens I think. Unless you are willing to wait patiently and see if the fatigue improves - though I'm assuming it hasn't in the last 3 months?

Mind you - I wonder if the desire to repeat the test "soon" takes into account it has been 3 months since the letter was dictated? Where on earth has it been?

[Carrollee in reply to PMRpro]

No idea where it’s been. The doc who did it said if there was a prob she would phone me back later that day so I just assumed it was all the usual wait and see. I was expecting to feel rubbish at this stage. I am happy to wait and see. I have had to deal with the death of my father and three other loved ones recently as well as a nasty fall (nothing broken) so not expecting to feel brill at the moment.

The letter is a bit confusing as it says to switch me from pred to hydrocortisone but then says stop the steroids 24 hours before the next test.

What is a good baseline figure? They are obviously working a bit. 10mg am 10mg pm and 5mg eve is her recommendation. Ta

[PMRpro Ambassador in reply to Carrollee]

One usually takes pred for PMR in the morning - and the test is to be done in the morning without having taken that day's pred. When you are on HC you take it 2 or 3 times daily - so you would take a morning dose (before 8am) and then no more until the test. Then take that morning's dose immediately the test is finished.

[Hidden]

Hi carrollee, I am not very knowledgeable but I know of one member who was in a similar position. She went onto hydrocortisone but didn't suit so went back on low dose pred. I suspect someone with better info will be along. But I wanted to say try not to stress too much, nothing is set in stone so far.

[Carrollee in reply to Hidden]

Thanks poopadoop. All the best cc

[SheffieldJane]

How long have you been on Pred. ?

How much are you on?

Those figures are not too bad.

I declined the advice to switch to Hydrocortisone. I am currently on 5 mgs Pred alternating daily with 4.5 mgs. My Adrenal function is improving by the week. My baseline is now 396. The Endocrinologist no longer needs to see me. So glad I didn’t move to 25 mgs of Hydrocortisone. My body just needed time.

[Carrollee in reply to SheffieldJane]

Hi SJ. Have been reading about your experience. Am on 5mg after 4yrs (pmr/GCA). No endocrinologist has been involved. The test was done in April but only got results today in a letter. I was on 5mg when test done but haven’t reduced any further as dealing with the loss of my dad and three other loved ones. Couldn’t face withdrawal symptoms on top of grief. My doc will get the letter on Monday. They want another test done in nxt couple of weeks but for me to come off pred. Just needed a bit of direction/advice. Thanks for your input cc

[SheffieldJane in reply to Carrollee]

I am so sorry for your loss - from experience I know that the loss of a parent strikes at the heart of you. I wouldn’t attempt change whilst going through all this loss. My guess is that we both had a short Synacthen Test while we were on too much Pred. Then you find yourself on a kind of conveyor belt of treatment. Keep us updated and take great care of yourself. 🌹

[Carrollee in reply to SheffieldJane]

Thank you for your kind words. May I ask, do you take your pred when you get up in the morning? I take mine around 2am and was wondering if taking it later might help the adrenals come back to life. I changed from breakfast to early morning around 10mg as mornings were so hard and the breke dose didn’t kick in fully til after lunch. Thank you cc 🤗

[SheffieldJane in reply to Carrollee]

I still take my Pred shortly after I wake up and have had some yoghurt. This time varies a bit and no variation has made any difference. Possibly alternating my dose between 5 mgs and 4.5 mgs has helped, however, I think that my body was just ready. I am still as tired as ever, it wasn’t the culprit.

[Carrollee]

Thank you Dadcue for your interesting thoughts. I was just told not to take the mornings dose before i came in (24hrs), as I take my pred around 2am it ended up being about 32 hrs since previous dose. All the best cc

[venezia1]

Hi - I am going for a synacthen test on Tuesday, but have been told I need 48 hours without steroids. You mentioned a baseline - what is considered to be normal- i.e. adrenals ready to work? I'm on 5 mg.

[Hidden in reply to venezia1]

Hi Venezia, there is not a baseline as such but each lab will have its own ranges of 'normal' so they can measure you against that. One website says:

"Normal ranges for ACTH are fairly broad and like cortisol levels are time-dependent. They also vary from assay to assay. A typical normal range for an 8AM sample using the new assays is 10 to 50 picograms per milliliter (pg/ml); levels are usually less than 20 pg/ml at 4 PM and less than 5-10 pg/ml at midnight."

csrf.net/doctors-answers/di...

[Carrollee in reply to venezia1]

That’s interesting Venezia, I was told just don’t take it the morning of the test, so 24 hrs from previous dose. All very confusing. I hope you get on ok. It’s nothing to worry about. Dadcue explains it well. Just sit back and enjoy the rest. I was at 5mg too. All the best cc 🤗

[tangocharlie]

I had a terrible time getting off steroids after 5 years on them, every time I went below 5 I felt dreadful. To cut a long story short, I was switched to hydrocortisone by an endocrinologist so that I could stop Pred. I felt absolutely awful, I really thought I was dying, felt very ill and dizzy, as the HC did nothing for the inflammation, just allowed my adrenal glands to gradually get going again after about 3 months I think. I was told by my rheumatologist that my PMR must have gone as I'd had it for so long, but it turned out it hadn't (PET scan showed I was still inflamed). So I was suffering from adrenals not working (similar symptoms to if you Google Addison's) and still also had uncontrolled PMR going on. I'm still not right 2 years later and am now having Depo Medrone steroid injections every few months which make a big difference. I do hope you get sorted.

[Carrollee in reply to tangocharlie]

Hi tangocharlie. Thank you for telling me your experience. Yesterday I received a copy of a letter sent by my professor to an endocrinologist prof asking his help with my case. So am waiting for the next step. Don’t fancy hydrocortisone as it won’t help the pmr. I just hope I am allowed to continue with the DSNS method and hope they come back to life eventually without resorting to another drug. Sorry you have been thru all this. Are your adrenals working now? Don’t know anything about depo medrone. All the best cc 🤗

[PMRpro Ambassador in reply to Carrollee]

HC may help the PMR if you are on an equivalent dose and take it 3x daily. Whether that is enough to prod the adrenals into life is another question.

However - if you need the pred for the PMR, there is little point switching just to regain adrenal function.

[tangocharlie in reply to PMRpro]

I think that was my problem. I asked the question at the time - 'how do I know if the symptoms I'm feeling (dreadful) are due to coming off Pred, or because I still have PMR and am on too low a dose to control it, or problems with the the adrenals not starting to work again? I was told by the rheumatologists to get off steroids because I'd been on them too long, which I think was the wrong advice. In a recent talk to the Ilkley PMRGCA group, Dr Mackie and Dr Pease said that rheumatologists were only just starting to realise what a problem it can be for many people trying to get the adrenals working again after long-term Pred.

[PMRpro Ambassador in reply to tangocharlie]

If they diagnose PMR then they also have to accept that the patient may require pred for up to 10 years. If you don't want to treat the patient for the disease they have don't diagnose them in the first place. And DO keep up-to-date:

medpagetoday.org/rheumatolo...

[tangocharlie in reply to PMRpro]

Thanks PMRPro, once again just the info I need to battle with Doctors. Especially 'Relapse rates were high among PMR patients, the researchers noted, especially during the early stages of therapy, and almost half of patients still require glucocorticoids 10 years after diagnosis'

[tangocharlie in reply to PMRpro]

Although my HbA1c readings are up, from 37 to 41, still below pre-diabetes but higher than I would have thought for someone who eats a no sugar, low carb diet, it must be down to the cortisol?

[PMRpro Ambassador in reply to tangocharlie]

Probably - or your diet isn't as low carb as you think! Which has happened several times on the forums!!

[tangocharlie in reply to PMRpro]

I'm pretty sure I'm doing it right

[Hidden in reply to tangocharlie]

Here's a link to a site that provides carb content of different foods...the details are at the bottom of the first page.

ditchthecarbs.com/guide-to-...

[tangocharlie in reply to Hidden]

Thankyou, lots of useful info on there