Synacthen test: On Tuesday I will have my first... - PMRGCAuk

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Synacthen test

YuliK profile image
YuliK

On Tuesday I will have my first Synacthen Test.

I’m now on 3mg of Prednisone after reducing from 60mg ( sudden hearing loss) and the cursed PMR.

If anyone else has had this test, I would love to hear how you felt during and after the test.

Thanks

YuliK 😷

46 Replies

Best time I ever had in a hospital.

Arrived with book, comfy chair, canula put in and then fell asleep. They woke me up when it was all over and they had marked the page in the book and took my glasses off.

Took about 3 hours but could be more - long time ago.

Result in about three days. adrenals had started to work.

YuliK profile image
YuliK in reply to jinasc

That’s sounds a picnic. 👍

Thanks so much ..

Just one more thing.

Did you have any reactions after the test?

jinasc profile image
jinasc in reply to YuliK

None whatsoever. Hope you have as nice a time as I did.

YuliK profile image
YuliK in reply to jinasc

That’s kind of you. Thanks. 🌹

Hi Yulik, I had sudden hearing loss too. Scary isn’t it. Luckily after a number of months, mine returned to about normal, but it was really frightening at the time. I also had the Synacthen test with no issues before, during or after.

Good luck. I hope your results are positive.

YuliK profile image
YuliK in reply to Songbird69

Songbird,Hi there

Yes it is very scary losing ones hearing.

Unfortunately mine didn’t return.

I’m so glad that yours did. 👍

I have just been fitted with a hearing aid. I lost my hearing nearly totally in the left ear... this was after I started prednisone

Songbird69 profile image
Songbird69 in reply to YuliK

So sorry your hearing didn’t return. I wear hearing aids anyway - as a result of Crohns. My hearing is by no means perfect but thank God for hearing aids!

Hi YuliK

I had one a good few years ago when l was on 5mg

You don’t take your Pred on the morning & l had to be there for 9am, they put a cannula in, took a base line blood test then gave me the synacthen & then took bloods every half hour until 10.30 then they gave me my 5mg Pred & Tea n Toast.

I’d taken my Kindle but it was a fairly busy Ward with lots going on, Terry stayed with me & the time flew.

Good Luck 🍀

YuliK profile image
YuliK in reply to MrsNails

Thanks Mrs Nails. Nothing like fear of the unknown. Now I now. 😄

I was quite anxious because I hate substances given IV as I can always feel it doing whatever in my body depending on the drug. Anyway, wasn’t too bad. Got an odd hot feeling in my stomach, like in the lining for less than a minute that made me feel a bit peculiar. Then I got on with my book. The cannula is only the tiny type, not the drain pipes used for other purposes.

YuliK profile image
YuliK in reply to SnazzyD

Thanks Snazzy, I feel a lot less stressed out for all the inputs.

Great group of people. 😍

The process has already been described. I had no ill effects whatsoever and I took my Pred as soon as it was all over. I had one Synacthen test at 6 mgs Pred that showed an inadequate response, the second test I had at 3 mgs Pred showed that my adrenal function had recovered ( a few weeks later). I was given an emergency Hydrocortisone injection kit just in case I experienced an adrenal crisis.

YuliK profile image
YuliK in reply to SheffieldJane

I understand from my rheumatologist that 24 hours before the test I shouldn’t take any prednisone.

I’m on 3mg but still get those morning pains, which pass after I start walking around. I’m a bit worried that without my nightly 3mg I might have a relapse.

SheffieldJane profile image
SheffieldJane in reply to YuliK

Yes that’s right, you should be free of Pred for 24 hours. I didn’t suffer too much, perhaps the novelty of busying off somewhere. I remember thinking “do I really even need 3 mgs?” Are you on coated Pred? When do you normally take it? Hopefully 24 hours is not long enough to precipitate a flare. I’d swallow it in the waiting area when they had extracted my last bloods, in fact, that’s what I did and then went to a cafe with my husband - remember them? ☺️

YuliK profile image
YuliK in reply to SheffieldJane

SJane thanks for reminding me to take the prednisone with me. I’ll put it in my handbag now for tomorrow.

My prednisone is not coated.

YuliK 😷

🌹

SheffieldJane profile image
SheffieldJane in reply to YuliK

Maybe a banana or something to line your stomach.

Sheffield Jane, I wouldn't remember husbands as I've never had one. Wives, that's another matter.

😉😉

Glad to hear the stories of this test. I'm nearly down to 5mg so expect GP may recommend it sometime but not yet.

Rache profile image
Rache in reply to ChinaWuntoo

Very funny 🤣

I meant remember cafes. Life was so simple then.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

What? Deciding which one to go to, what sort of coffee to order and all that nonsense (very simple here, espresso or capuccino) ...

Telian profile image
Telian in reply to PMRpro

My son would agree with you entirely......

SheffieldJane profile image
SheffieldJane in reply to PMRpro

Just walking in somewhere, sitting down, barefaced and a smiley person brings you what you want. Coffee with hot milk or a pot of tea in my case. Are you already allowed that in Italy?

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

Outside yes, as of this weekend. Supposed to be inside too if you prove you have had 2 jabs or Covid and recovered or had a negative test in the last 72 hours. Have to wear a mask until you sit down. There was supposed to be an app but the security people are getting iffy about it so that may not come to pass. I have my certificate - all official and stamped, handed to me at the end of the 15 min wait after the jab. I will, however, NOT be going inside anywhere except the supermarket ...

Don’t hold your breath ChinaWuntoo. Another area that we have to be proactive. The response I got when I requested one was a kind of shocked “ I don’t think you’ve got Addisons”.I failed that test.

PMRpro profile image
PMRproAmbassador in reply to YuliK

It is one problem with a night-time dose. If it were me I'd take 3mg in the early morning the day before and hope it lasts.

Can I ask why the test is taken in the first place, down to 3 1/2 at moment. What happens with the result ?

I had the test a couple of years ago, I had got down to 2.5mg but they swopped me to hydrocortisone for a few weeks before the test. I can’t remember the dose. Anyway it was fine. The nurses where very kind & it’s was in a room with other people having various infusions all sitting quietly reading etc. Well spaced out ofcourse! I had no reaction to it at all & took my HC afterwards. They discovered very low adrenal function & I now take 3.5mg pred daily as a maintenance dose. I had been on pred since 2011 for PMR. Hoping for a review later this year if I can get one! All the best.

How are you feeling?

Not sure what a Synacthen Test is and what is it for.? Does everyone with PMR have the test? I’m currently on 1.25 mg.

SheffieldJane profile image
SheffieldJane in reply to Liby57

A Synacthen Test measures the potential for your body to resume producing its own Cortisol . This function switched off during Prednisalone/ steroid treatment. Once we get below about 7 mgs of Pred our own Adrenal glands need to kick into life. In some patients this can be slow to happen or rarely they don’t recover and lifelong treatment is required - Pred or Hydrocortisone supplements. It can take a year or so for your Adrenal function to completely recover. A Synacthen Test will tell you if this is likely. It is tempting to suppose that the fatigue most of us experience is linked to this but it can be the autoimmune disease or the medication we are on.Dizziness, overwhelming fatigue and stomachache at the low doses of Pred should be investigated, these symptoms can point to low Cortisol and worst case scenario an Adrenal crisis.

PMRpro profile image
PMRproAmbassador in reply to Liby57

By no means everyone does - many doctors assume that it is rare for it not to return. A study a couple of years ago has found is more common than thought but just tends to be slower than they expected.Are you doing OK on 1.25mg? Not excessively fatigued and it not improving?

Liby57 profile image
Liby57 in reply to PMRpro

Overall I feel ok, I don’t feel fatigued but do have a few headaches and have got some tendinitis symptoms in my arms. My arms are a bit weak but Rheumatology have advised that this is a side affect of Pred and lanzaprozole. I have stopped lanzaprozole and if I take paracetamol the tendinitis symptoms ease.

PMRpro profile image
PMRproAmbassador in reply to Liby57

You are probably fine - but if you ever feel really unwell, especially after something stressful, don't hesitate to seek medical advice. Even call 999 if necessary

Just had my first one last week - it was as people described. I posted on my friends WhatsApp group after ‘if you want a peaceful couple of hours this was the place to be’! It really was quite pleasant!

My adrenals appear to be ok. I was wondering if it shows ok is that it? I definitely seem to have some of the symptoms of them not working when I go lower than 4mg a day.

I guess time will tell 🙂

Hi. Have had a couple myself. Very restful. Nice cuppa while waiting and my friend was allowed to sit with me so we just chatted or read mags. No troubles during or after. Didn’t even feel the cannula go in (my first ever cannula). They fix it in place with a special plaster. They had run out of adult ones so I got a paediatric one with teddy bears on which made me smile. I was on a day ward with ones having biologics administered. We all had teddy bears plasters. I think it should always be teddy bear plasters, adults worry too. 😊. You will be fine. All the best cc 🤗

Jealous!

Hi there. I was quite nervous but didn't need to be. Sat in chair and had bloods taken as normal etc. Didn't have a canula just had bloods etc from arm. Took about 3 hrs in total but had cuppa and biscuits. Felt no reaction during or after. Took my pred (5mg) as soon as got home. Results took about 1 week but all ok. Hope all goes well with you too.

YuliK profile image
YuliK in reply to DOZY

Thank you Dozy. Tomorrow is my test. 🤞

Sounds like you’ve nothing to worry about. Hope you get tea and toast too 😉

YuliK profile image
YuliK in reply to Rache

Rache thanks, I do hope that refreshments are served. 👍

Maybe bring a snack such as a banana to take with your pred in case the tea and toast is not forthcoming 🍌

YuliK profile image
YuliK in reply to Rache

Yes I will. 👍

Hi! Congrats to getting to 3mg! I was thinking of getting a synacthen test but the nurse told me I would have to go off my Pred for 2 days? That seems crazy. So I got scared off!

PMRpro profile image
PMRproAmbassador in reply to Dragonflys

At that low a dose 24 hours is enough for an experienced endo to read the result. There is a guy in Scotland who had made it his job to be able to assess adrenal function with the patient on more - for when it was downright dangerous to reduce pred too far such as in paediatric cases. It isn't as if it gives a watertight result - it can only show the gland is still functional - not whether everything else is working perfectly.

Good luck, let us know your result.

Thanks everyone for your support. Great group all of you are. ❤️❤️

Finished my synacthen test this morning 👏

All went well, had a lovely big comfy armchair and nearly dozed off a few times.

Didn’t get tea and biccies , but a bottle of mineral water instead.

After I finished I went to the cafeteria downstairs and had a super coffee.

Should get the results next week 🤞

I’m going for a nap now.

YuliK 😷

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