I know some of you on here have posted about adrenal insufficiency due to steroids long term.well,I saw endocrinologist today at Chase Farm Hispital and she was concerned as tapered steroids down from 5 mg to 1 mg over last year,have lost weight and had bouts of nausea.She thinks adrenal glands may not be working as been on preds since2001.Phoned for an urgent test at Barnet Hospital tomorrow,and has got me worried.I understand that I have a blood test then a shot of something,more blood tests afterwards to see levels .has anyone had this test,was it o.k. and what were your symptoms before tests that something was wrong.any reassurance would be very welcome,as is usual got a bit of a panic going on this evening,here on my own!At least my son is driving me there,although hated to ask as he works nights and won’t get in until the morning.
He will have to bring his labradoodle in the car as not sure how long it will all take,so that will be a welcome distraction for a nervous passenger! Thanks everyone if you can help.love xxxx
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Doodlereggie
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Hi, yes I have been through the test several times, I have severe adrenal insufficiency, diagnosed in 2018. I had suspected I had adrenal insufficiency, I was losing weight pretty fast, had nausea, headaches, lightheaded and dizzy, postural hypotension where my bp plummeted whilst standing. I’m normally very laid back, and nothing stresses me, but I was very tearful, everything was stressing me out. I had an endocrinology appointment booked haven got to 4mg of pred. Unfortunately I had a severe stroke, 3 weeks before the appointment, which was found to be due to an adrenal crisis.
The test is a SST - short synacthen test, they can normally put a cannula in, and take a sample of blood to check what your baseline cortisol is, they follow that with an injection of ACTH, which is the hormone that sends the message to the adrenals to produce cortisol. The baseline at 8-9am should be around 450, and certainly after the acth injection, it should rise above 450. They take another blood sample 30 & 60 mins following the injection, which I should have said is normally administered through the cannula.My cortisol was undetectable before the injection, and only went to 72, following the injection. I was told 90% of my adrenals have atrophied, and I need steroids for life. They usually recommend you get seen at a centre of excellence, as it’s classed as a rare illness.
You can expect to be there for around 2hrs. Hopefully they’ve advised you to hold your prednisolone till the test is complete, you need 24hrs without any steroids, that includes inhalers and creams. So take your steroid with you, and take it as soon as the test is complete.
If you need any further info, I’m happy to answer. Also please don’t stress at the mention of my stroke. It’s apparently very rare for steroid induced adrenal insufficiency, to get to the levels I had. The endocrinologist was astounded I’d still been working as a nurse, despite feeling like death. The test itself is straightforward, the results are back the same day. What dose are you currently on?
Thankyou so much for replying so quickly,I hoped it would be you!!my appointment is 1.30 tomorrow,I have to not take my preds in the morning,and will take them with me.i was initially on 20 mg back in 2001,then down to 5 mg for the last 20 years or so.as ,for the past year I have been on filgotinib 200 mg which has been amazing,my crp levels drop dramatically down to 7 which was unheard of for me.so Dr Persey my rheumatologist asked me to reduce my steroids down to zero over this year,so I am now down to 1 mg,lowest for 23 years,with no flares of much importance during the tapering,which I know is very lucky.I may just have lost weight because of steroid reduction,or ,when I am stressed I don’t eat.i only normally weigh 7.5 stone and am now 6stone 11.My hair is thinning,and I feel nauseous some days,that is all really that is new.
That’s the full picture,I was 80 a few weeks ago,so am lucky to be as well as I am with ra since 2001.I do count my blessings,believe me !,Love Joan xx
It may be as you say, that your steroid reduction has caused your weight loss. I was on steroids for polymyalgia and GCA, where steroids were the only treatment. I was on doses of 40mg, tapering slowly. It was 6yrs later when I was diagnosed with ankylosing spondylitis, and started biologics, that I tried to taper off, as it’s not recommended in AS. I very quickly developed severe nausea, and dizziness. The goid thing is their testing you, and if found your adrenals aren’t working, which there is likely going to be some blunted response after all these years. The treatment is simply continuing on steroids. Usually they prefer hydrocortisone, but due to my inflammatory arthritis, I’m allowed to continue on prednisolone. The recommended dose for adrenal insufficiency is only 3-4mg. I take 4mg daily. Although I take 3mg at 7am, and 1mg at 3pm, as prednisolone only works as cortisol for 8hrs, whereas it’s 24hrs gir it’s anti inflammatory action.
Congratulations on reaching 80, good to hear you manage well. Good luck tomorrow, and honestly nothing to worry about 🤗
This post came exactly as I was about to post with a question about pred! Thanks to Rinvoq I am finally down to 2mg and sort of feel like I might just get off those little white devils! But I’m genuinely scared as to how to reduce at this stage… been on them since 2016! Should I continue trying to reduce?
Good morning I reduced my prednisolone from 10 mg to 2.5 mg I reduced it very slowly. I've been fine .my GP said I will have to stay on this dose of 2.5 mg for life as I've taken prednisolone since 1990 s. I had a test for my adrenal glands and they were still working. I had a big flare earlier this year the consultant put me on 7.5 mg and they didn't suit me at all so I reduced to 5 mg then back to 2.5 mg.its a difficult drug to tolerate. Hope you recover soon. Xx
Unfortunately at present, there is no way to predict whose adrenals will be affected and who’s wont. What I’d suggest, is if your struggling symptoms that can suggest low cortisol, the. No ask your gp to do an 8-9am blood cortisol. It can be done at your surgery. Symptoms are generally: nausea, lightheaded, dizziness, headaches, low blood pressure, sometimes abdominal pain and fatigue. If you don’t have these symptoms then it’s generally safe to proceed. At low doses I used to do what one rheumatologist called “the dead slow, nearly stop taper”, it took 7 weeks to drop 1mg. If you have the blood test, it’s important not to take your steroid that day, till you’ve had your blood test. You need to be 24hrs since your last steroid. If that result is low they should refer you to an endocrinologist for the SST to check your adrenals. Hope this helps 🤗
Hi there, well I agree with Runrig's advice, I was on 5mg of prednisone for 24 years when I had a new consultant who insisted I get off the preds, it took me 18 months to finally get of them, nightmare, couldn't get my head round how slowly you had to reduce the dosage, had many SST tests,luckily my adrenals kicked in again and no longer on them,all I can say is slowly slowly, wishing you all the best Jeremy
Hi Thankyou so much for your reply,it sounds like our preds history is the same!I didn’t mind coming down on preds as caused osteoporosis and diabetes borderline!!like you I did it very slowly over the year,so think I am probably,like you,not adrenals compromised.had my tests today at Barnet Hospital,just got in so waiting for results asap.sure all is fine.will keep you posted best wishes Joan
Good morning. I've been on prednisolone at various doses from 60mgs for GCA down to 5mgs which is what I am on now. I started taking them initially in the late 80's , and then continually since 1997. Every time I try to reduce I feel really unwell and I have been told not to try as I would end up seriously ill. I have never been offered a test to see if my adrenals would kick in again. I have RA sero negative and another auto immune and am on Biologics but I would love to come off pred. Did you ask for the test, or was it offered as I am seeing one of my Rheumatologists next week and could mention it and see what he says. I'm just surprised that after all this time no one has wanted to check. TIA.
Hi.as you say I have been under the same rheumatologist since 2001 and he has never suggested this test ,just wanted me to reduce my steroids over the last year until I see him next week ,he wanted me off them totally as the new meds JAK have kicked in.i did not have any problems that I knew of in initial tapering,but recently,on 1 mg have felt nauseous at times and losing weight,probably due to not eating when feel so.the test came about in a strange way,as was seeing endocrinologist for another problem on Wednesday,and when she knew about my steroid reduction after so long on 5mg,together with how I am feeling,she phoned another hospital there and then for this test urgently,which panicked me.went yesterday to Barnet Hospital,test took 1 half hours as took a while to get blood pressure down first!just a blood test via cannula then injection,another blood test after half hour and then one hour.just boring,but given coffee and biscuits.no after effects at all.I would definitely ask your rheumy when you see him,just to be on safe side,you will then know for sure re your preds situation going forward.keep us posted and good luck.xx where would we be without this forum !!!
So if you are on less than 5mg your gp can order a blood cortisol between 8-9am, you just hold off your steroids for 24hrs, but can take them once you’ve had the blood test. If that comes back low, your gp can refer you to endocrinology for further tests, such as the SST which Doodlereggie describes. You should be referred if it comes back less than 300. If it’s higher than that, then it suggests your adrenals are still capable of producing cortisol. Hope this helps
Back in 2020 I had my blood cortisol taken by my Gp, as far as I can remember I wasn't asked to omit the prednisolone. The result came back as < 20nmol/l . I think I was jut told it was because I was on prednisolone and not to worry?
If you hadn’t omitted steroids for 24hrs, you will get this kind of result. That’s because your body recognises your getting enough cortisol from ghe steroids. The replacement dose is only 3-5mg. They also advise not checking cortisol levels till your at 5mg or less. You could ask them to repeat, ensuring this time you withhold all steroids, including inhalers and creams. You’re not on oestrogen meds like HRT or the contraceptive pill are you, as these can give false results, and you usually need to be off these meds for 6 weeks before testing.
The concern is if your level is low, and your adrenals are asleep, then any illness or trauma, will make you seriously unwell. So if the levels low, you need a SST to see if the adrenals are capable of producing a surge of cortisol when needed. There is no other way to check if your adrenals will respond. If the blood cortisol is >300, you can be reassured your adrenals are fine.
Also if your adrenals aren’t producing enough cortisol, you need to be issued with an emergency intramuscular steroid injection, to carry with you at all times.
Thanks for your reply. I used to be on a maintenance dose of 7.5mgs for quite a few years after the GCA so I decided to reduce to 5mgs as I was told it would be better for my body. I didn't really have any problems but I can remember many years ago I wanted to stop completely and so carried on reducing very slowly, this was when I started to feel very unwell and was told to stop but no one said to do the test your having, so it would be good to know if I can reduce or if my adrenal glands have packed up for good.😁
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