Goid afternoon
Having a Synacthen test next week and have to stop my 7mg Prednisolone 48 hours prior to the test at 9am , so basically miss one whole day as I take it about 8am . Have been asked to take medication with me and have it as soon as test complete . My Consultant assures me this is safe but I am pretty anxious at the prospect .
Just wondering how others have felt .
All things considered it is likely to be a bit of a waster - there is no point doing a synacthen test above 5mg pred as that is plenty to suppress adrenal function. Most endocrinologists say below 5mg, some won't do one until 3mg.
Who arranged yours?
Thanks for quick reply , agree with your comment but this is a Rheumatology request and the Prednisolone has to be stopped to measure and promote a response by my Adrenal Glands.
Consultant tells me he will then be able to assess if my glands are damaged and he will then take advice from Endocrinology .
He … and I are very anxious to get me off Prednisolone ASAP . He tells me there is no point waiting another year on a very slow taper to only find it’s the steroids causing more problems than the PMR.
Sorry for long post … just a bit of background .
"Consultant tells me he will then be able to assess if my glands are damaged "
That's exactly my point, no he won't. The adrenal function takes a lot more than 48 hours to recover and they can take months to start to function again. It isn't until the pred has been reduced to 3 or 4mg on a regular basis over certainly weeks at least that there will be any way he can tell how asleep adrenal function is.
There are people on the forum whose adrenal function was non-existent at 5mg, poor at 3mg and OK at 1,5mg, 7mg is suppressing function almost entirely - and it won't recover in 48 hours without pred.
Thanks for your input clearly very knowledgable .
I understand the Adrenals cannot recover in 48 hours and the results may not be 100% accurate but he seems to worry that I have more symptoms from Steroid side effects than the PMR . The test , as far as I can understand is an artificial stimulation of the Adrenals not a measure of its current state .
Good advice on contacting the clinic they have confirmed 48hours .
….he seems to worry that I have more symptoms from Steroid side effects than the PMR
What symptoms in particular?
I can't put it any more clearly: if the adrenal function is suppressed due to the relatively high dose of pred (7mg) then there won't be even a 50% reliable result, never mind 100%, because the point is that the adrenal glands go into hibernation while you are on above about 7 or 8mg pred and won't respond to the stimulus with the synacthen. The result is pretty meaningless - it is most likely to show no adrenal function but it doesn't mean it won't return as the pred dose is lowered.
All you can do at this stage is continue tapering the pred dose irrespective of the state of the adrenal glands until you achieve a dose at which there is some purpose in doing the synacthen test. What usually happens is that you develop some of the symptoms of adrenal insufficiency, predominantly fatigue, and are at risk of an adrenal crisis in an emergency situation because the adrenal glands can't respond to that and produce cortisol. Once you are at a lower dose of pred, the synacthen test will provide a better indicator. As it is, at present it is a waste of resources.
Hi 5goflotilla, and welcome to the forum.
I don't have synacthen test experience to share but you might want to take a look at the 'related posts' section which will appear if you scroll down the page after you've posted.
Here is a link to one that seems relevant for your query while you wait for others to reply
Thank you
The problem will be it will come back that the adrenal glands are not working very well and the doctors may not take into account that the steroids are doing the work of the adrenals.
I agree with PMPPro, at 7mg it is very likely the test will show suppression of the glands as you would expect. My Endocrinologist liked patients to be 4mg or less and said that even 5mg was enough to give misleading results. My GP referred me not my rheumatologists. To be honest it doesn’t seem to be an area of expertise for any of the rheumatology doctors I saw when I was under 10mg. One thought the adrenal glands came back on line seamlessly.
It might be worth calling the endocrine clinic to ask if the Endo would prefer you to show up further down the line.
For both my Synacthen tests I was told to go without for 24 hours not 48. Again the clinic will set you straight on their protocol.
If you do have it and it isn’t good news, really don’t despair at this stage.
thanks SnazzyD it’s a flippin nightmare isn’t it . So many people seem to have no confidence in their Dr’s I feel mine have been very proactive and inclusive , both GP and Consultant .
He said the same thing , if the results are poor Will will cross that bridge when we need to .
Well my concern if I were in your shoes is that you would be needlessly given another medication when you show no adrenal ability to produce cortisol. Now, I had a morning cortisol test when I'd been at 5 mg dealing with a flare for a few months. I had started to taper a bit more before the test so had briefly been below 5 by then, but I gave up pred for about 60 or 70 hours and the result of this test (which is not like the synacthen) was that I had cortisol production exactly in the middle of the normal range. This was after more than 6 years on pred. You are not likely to show any cortisol production at all and your doctor is going to feel they have to do something about it when all they need to do is allow you to continue to taper carefully.
What symptoms do you have which they think may be caused by pred?
I was only asked not to take Pred on the day of the test until it was over and this was twice. Once at 5 mgs which I failed and once at 3 mgs which showed a very good result.
My Endocrinologist had me taper to 5mg of prednisone which I have just done. She has now switched me over to hydrocortisone which I take twice a day as it has a shorter life than prednisone. She is hoping it starts “nagging” my adrenals to wake up a bit more.
The hydrocortisone dose (10mg in am and 10mg at dinner) is considered physiologic dosing of the hydrocortisone (meaning it is the same amount your body should make on its own). In one month they will do the Cosynteopin (ACTH) test. Since hydrocortisone does not stay in your system as long as prednisone I will only have to miss one dose. I had a blood cortisol test last month which was low and rheumatologist sent me to Endocrinologist. In the mean time I must were a medical alert bracket saying I have adrenal insuffiency and steroid dependent.
Peggy
We are all advised to wear a bracelet or carry a card alerting any first responders etc that you have suppressed adrenal function and to continue to carry this ID for a year after ceasing the corticosteroids.
Are your symptoms under control on the hydrocortisone?
No one ever mentioned a card or medical alert until I saw the endocrinologist, she also said it is the first thing that will show on my medical record should I end up in ER. I’m in the US so it may be different here?
I note you haven't put any info in your profile yet. . How long have you been on pred and what was your starting dose? Were your symptoms well controlled before you started tapering?
I will update my profile for sure. I was diagnosed two years ago with GCA. (I had never heard of it before)
My cardiologist suspected it put me on 80mg of prednisone and sent me to a neuro opthamologist who did the biopsy about 10 days after starting prednisone, it was positive for GCA. I also started Actemra after they felt it was under control ( I had some optical issues) I was doing ok tapering then there was a shortage of Actemra so I didn’t have any for two months and esr and crp went way up again. Started Actemra again and tapering. Have had some up and downs and a second bout of covid, thankfully not as bad as the one in June of 2020. I got down to 5mg and had some issues, honestly it hard to tell if steroid or GCA. Then In Sept or Oct I got pnemonia just as I was going to 3mg and everything fell apart, had to stop Actemra and go up to 40mg of pred. Got over that came down pretty quickly on the pred then got covid in January. Anyways rheumatologist tested blood cortisol and it was very low and referred me to endo and here I am. I think I’m doing ok, I get so extremely fatigued out of nowhere, headaches and nausea. Oh and the crying jags out of nowhere (not like me) yesterday was taking a walk sat on a bench to rest and just started crying. I’m a mess mentally lately, well more so than usual, lol.
Peggy
Well, you have had a time. I'm so sorry. However you may need more pred or hydrocortisone to replace your natural cortisol. You'll need to take enough steroid to cover your bodily needs and taper the last few mg really slowly. Five mg of pred is, according to a conversion calculator I just consulted, equivalent to 20 mg hydrocortisone. It is possible that your dose of hydrocortisone is not quite strong enough to cover your needs. Your doctor may want you off pred and think that taking you off will boot the adrenals into action, but they do need time, and meanwhile you appear to be suffering. Obviously we aren't doctors and don't have their education but your reaction sounds a lot more like too little steroid, not too much. It's great that you were able to get Actemra to deal with the GCA, but as I said, your adrenals really need some time to build up again. It should come, but maybe not as rapidly as the doctor expects. Patience is the key here. Good luck!
PMRpro ‘speaks’ many wise words.
thank you all for your input , I have been taking Pred for 10 months starting at 15 mg for PMR . At 10mg I started to have more of a problem with dizziness , weak legs , nausea and fatigue .
The muscle aches were more than manageable and I have never had trouble getting out of bed or lifting arms about my head , my Rheumatologist feels the GP was too quick off the mark in starting my Prednisolone. ESR and CRP were not done until 3 days after starting medication …… I know but it’s a long story .
It seems there is considerable disagreement among the Medics regarding ESR and CRP . My Consultant is of the view they MUST be raised for PMR and as he had no accurate measurement he wants me off the Prednisolone ASAP, as I do .
You said: Consultant tells me he will then be able to assess if my glands are damaged and he will then take advice from Endocrinology .
This is another story of rheumies who know little or nothing about PMR. Let him/her do it and the endocrinologist should put them right? Unfortunatley you will be wasting your time but hopefully you will not suffer from lack of pred (keep the gap to the minimum).
Funnily enough I asked my Rheumy ( special interest in PMR and very reputable) a few weeks ago about having a synacthen test as stuck on 7 mgs pred, lowest I have ever got is 4 and been on pred for just over 8 years now and this was his reply...'A synacthen test is simply to see if your adrenal glands are working behind the scenes but the help given by this as a result wouldnt / doesn't make any difference to your steroid needs which are determined by your symptoms control'.
PMRpro knows what she is talking about.
Anyway best wishes.
Yes, and even my GP said to remind him when I get down to 3 mg. I asked him at 3.5mg and he sent me for an ordinary ACTH blood test and I await those results.
Everything PMRpro has said is 100% correct. I have developed adrenal insufficiency from my years on Prednisone due to PMR. But I did not experience those symptoms until I had stopped prednisone. And all it takes for me to feel normal again is 25 mg of hydrocortisone which is equivalent to slightly more than 5 mg of prednisone. (20mg hydro = 5 mg pred) In the adrenal insufficiency groups I belong to almost no one takes more than the equivalent of 5 mg prednisone to treat their adrenal insufficiency regardless of the reason they have AI. I wonder if your rheumatologist should confer with an endocrinologist before having this test done. It may be that your rheumatologist does not quite understand the nuances of adrenaline sufficiency and steroid replacement.
Are you saying if you are on prednisone for years, that adrenal glands will never get back to normal,? Ive been on for over 6!/2 yrs, was down to 4 mgs from 40, now before Christmas had to start all over due to suspected GCA(which apparently was not according to temple ultrasound) , and have gotten to 15 mgs as of a week ago, wondering what to expect after a long road ahead of tapering?
Not necessarily, it depends on the person. One former member of the forum got off pred altogether after 13 years continuous use and many years intermittent use. 6 years is about average and lots got off pred after that.
I'm sorry if what I said was confusing. PRMpro is right. It doesn't happen to everyone and those like me that it does happen to stand a chance to get past it. It's called secondary adrenal insufficience. Addison is primary and is caused by an autoimmune disease and they have it for life. When it's caused by taking steroids it is possible for the adrenals to wake back up. And there is yet another type of AI. It can be caused by a tumor on the pituitary gland.
ok, so what dose were you at, when diagnosed with adrenal insufficiency then please?
Actually I hadn't had any steroids for a couple of months. And then I had a significant health issue come up and I was in the ICU for 5 days very sick. After 3 months of being this ill I developed adrenaline sufficiency. It was blamed on the steroids I had been taking for 4 years. I thought it was kind of odd that it cropped up when it did but I believe that my illness may have been a contributing factor even if my doctors don't believe so.
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