Synacthen Test

[Orpheus82]

I’m due to have a Synacthen test next week and have to switch from Steroids to Hydrocortisone from tomorrow for 5 days. Can anyone who has had this test tell me if their PMR symptoms were worse whilst on the hydrocortisone or did it give reasonable relief? I’m currently on 3mg of pred and have been feeling pretty comfortable. I’m hoping it won’t set me back but I’m keen to find out if my adrenals have woken up.

[PMRpro Ambassador]

I don't think I know of anyone who was made to switch before the test - lots of people recover function even while on pred once they get to below 5mg. The biggest problem with the HC is that its effect lasts a lot shorter time and you will need a dose 3x daily for good management of any PMR pain.

Megams is on HC altogether because of problems with pred - she can probably give you some advice.

[Orpheus82 in reply to PMRpro]

Thanks for that. The endocrinologist doesn’t want the pred to skew the result of the test. I’ve been advised to split the dose of HC into three across the day and then nothing at all for the day before. The rheumatologist felt that my adrenals should be working at 5mg but they clearly didn’t as I had an adrenal crisis following my mastectomy. I’m due to have more surgery soon and he wants to check that they have woken up!

[SheffieldJane]

I think Pollyanna switched to Hydrocortisone after her Synacthen Test showed that her Adrenal function was deficient.

[Maisie1958]

Hello Orpheus. I’m probably confused but certainly hope your adrenals have woken up if your rheumatologist doesn’t want you to take any corticosteroids at all the day before the test. Maybe I haven’t read it properly but if you had an adrenal crisis on 5mg prednisolone daily it seems a bit reckless to stop medication (ie the hydrocortisone) briefly even if you have been fine on 3mg for a while. I know it’s best to be on the lowest possible dose for true results...however...

I’ve not had the test so I’m very happy to be corrected xx

[Orpheus82 in reply to Maisie1958]

It seems a little worrying having nothing at all the day before. As I know the signs of a crisis and fortunately work in a hospital, I'll hot foot it to A&E if anything starts to happen.

[Maisie1958 in reply to Orpheus82]

Sorry I did get confused! Didn’t mean to cause concern -and I owe your rheumatologist an apology Xx

[PMRpro Ambassador in reply to Maisie1958]

One day without pred is unlikely to cause a problem even if the adrenals haven't woken up - the adrenal crisis at 5mg that Orpheus mentions was in response to a serious operation and so the endo wants to be sure it doesn't happen with the next lot of planned surgery.

[Maisie1958 in reply to PMRpro]

Thanks, I have got confused-easily done x

[PMRpro Ambassador in reply to Maisie1958]

It is so difficult sometimes when you are reading it on screen, especially if it is on a phone.

[Maisie1958 in reply to PMRpro]

You are tactful, I need to think before I write 🤦‍♀️. Even if I view on my phone (which I love 🍏) x

[PMRpro Ambassador in reply to Maisie1958]

Me - tactful? Thank you!! I do everything on a computer and even with that I sometimes need to read two or three times!

[Orpheus82]

It seems a little worrying having nothing at all the day before. As I know the signs of a crisis and fortunately work in a hospital, I’ll hot foot it to A&E if anything starts to happen.

[Orpheus82 in reply to Orpheus82]

OOPS............manage to reply to myself! Sorry

[PMRpro Ambassador in reply to Orpheus82]

And??? Lots of people do - deliberately too sometimes

[Maisie1958 in reply to Orpheus82]

I’ve been stuck at low dose prednisolone for ages which usually is good controlling pain/stiffness -mainly fatigue that’s the problem. Please let us know your results. All good wishes xxx

[Pollyanna16]

Good Morning, yes as Jane says I swopped to HC before my synacthen test and didn’t feel much different. I had been on 2.5/3 mg pred & then took 15mg HC in 2 doses. This took several weeks in the end due to NOT being advised not to take the HC the morning of the1st blood test 😬 If I remember rightly I took my last dose the morning of the day before the synacthen test. I think overall I noticed that HC was not as effective as Pred from a fatigue point of view. After the synacthen test the endocrinologist & I discussed which drug to continue with ..... possibly forever, & I chose Pred. One dose a day seems much simpler. After a chest infection over Xmas am now on 6mg coming down from 8.5. Need to get back to 5. I really don’t know how quickly you can reduce. I am concerned that no one is keeping an eye on me & indeed the rheumatology dept says I seem to have dropped off their list. Luckily they then got me an appointment with my rheumy mid Feb. Would have thought follow up synacthen tests, maybe yearly, would be needed!

Hope all goes well. The test itself was straightforward.

[Orpheus82 in reply to Pollyanna16]

Thank you Pollyanna. That is most helpful. I’ve swopped over today to HC so it’s too early to tell if there’s been any change. As for fatigue I’m constantly knackered as are my colleagues in the NHS. It’s a brutal place to work these days but I still love my job!

[Suffolklady]

Yes I have been in your situation. Endocrinologist swapped me from 5mg pred to 20mg Hydrocortisone in prep for a Synacthen test in December. The difference being he wanted me to be on h/c for at least a month before the test to get an accurate reading. First two weeks were shaky I felt really rough then I felt better in myself, far better than being on Pred. It was explained to me that the month of this regime no cortisol from 5.30 until 8.30 each night could, with luck, prompt my Adrenal gland to wake up, however pain after 6 weeks has been murder. Not sure what it is a flare or something else. I had my test just before Xmas which was not a bad experience. No H/C that morning until I had the first test and I felt fine. Mine test was extensive 5 draws through the day every two hours until 6pm ( that was a long day) Results came a week later (very efficient endocrinologist) I still need the support of H/C but I’m absorbing the drug well which is a good thing. So there is hope for recovery but in time. Reviewed again in March. My main problem atm is the pain it is bad with stiffness in my joints and painful muscles. I realise pred is much stronger for pain and H/C isn’t as effective but we are looking into alternative meds. Took a short dose of anti inflammatory which made all the difference but that’s short term. Blood tests on Tuesday maybe will show up something. Good luck with your test.

[Orpheus82 in reply to Suffolklady]

Thank you for sharing your experience. It’s interesting how these tests vary around the country! I’ve only got to take the HC for five days and then nothing on the day before and none on the day of the test. Apparently I’m having a ‘short’ synacthen test which should take 2-3 hrs. I hope so as I’m planning to go back to work in the afternoon. Fingers crossed I feel alright during and after the test.

[piglette in reply to Orpheus82]

I understood you could take a dose immediately after you have finished the test, although I may be wrong.

[Suffolklady in reply to piglette]

I took my normal dose of hydrocortisone as soon as the first blood was taken and throughout the day as normal.

[Orpheus82 in reply to Suffolklady]

Yes I’ve been told I can take my usual dose of pred as soon as test is finished Let’s hope my naughty adrenals respond to the ACTH. I’ll keep you posted.

[Suffolklady in reply to Orpheus82]

Fingers crossed for you

[Orpheus82 in reply to Suffolklady]

Synacthen test was very straight forward and went smoothly. Interestingly my pain was much less on HC than on pred. However, having had nothing yesterday I was incredibly fatigued today. I took my 3mg of pred immediately after the blood test so hope energy levels rise soon. It was lovely to be pain free if only for a couple of days. Results should be back in a few days so it will be interesting to see what’s happening with adrenals.

[Suffolklady in reply to Orpheus82]

That’s really good news I do hope like me there is hope that things might change for you and your Adrenal gland starts to work again. Silly question but is there a reason you went back to pred if you had no pain on hydrocortisone and there’s more chance of recovery for your Adrenal?

[Orpheus82 in reply to Suffolklady]

No, purely practical in that I have loads of pred but they only gave me just the right amount of hydrocortisone for the test purpose. I’m intending to discuss with my GP as I may well be better swapping over.

[Suffolklady in reply to Orpheus82]

I don’t think the pain relief is as good for me and I think I had a bit of a flare up which took time to settle but I feel better in myself. You might find it’s right for you but you were not on it long enough really to get a good idea. Thing is if you swap and it doesn’t suit you you can always swap back.