After nearly 10 years on pred I had a meeting with my Rheumy this morning , tests showed my adrenals aren’t up to scratch anymore but the endocrinologist wants a definitive answer as to can they start up . So tomorrow morning they have told me not to take any pred ( currently on 4.5 mg haven’t been able to drop even a quarter of a mg for the last 18 months) and replace in with 10mg of hydrocortisone then 5mg hydro at lunch time and 5mg hydro at tea time and continue on this routine till the hospital take me in for more adrenal tests which should be end of next week . Basically they want all the pred out of my system for the tests . Anyone else had this method used to replace pred before the adrenal tests , they have given me 2 months worth of hydrocortisone tablets.
I have to say after nearly 10 years it is a little scary to get up tomorrow and not take any pred I hope the hydrocortisone does what it’s supposed to , we hear about adrenal crisis situations 🤞🤞 are double crossed for the outcome .
wish me luck 🙏
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Gaz227
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I've been in this same position going from 5 to 4mg Pred. I was taken off Pred and switched to hydrocortisone. This was on the presumption that my PMR had gone away, but it turned out it hadn't, and I flared up big time. HC keeps your adrenals going but doesn't do anything for PMR inflammation. I can see their logic in preparing you for syancthen tests. So I guess what happens to you next depends on whether your PMR is still active. But then also if you do think the PMR is active, the fact that you're not on steroids would mean you could in theory have a PET CT scan which would show any inflammation such as PMR. Hope this helps
~Hi Tango - interested reading your comment - HC keeps your adrenals going but doesn't do anything for PMR inflammation.
I've been on HC 10.5 years as in NZ we don't have enteric coated pred and it ulcerated my gut. Couldn't tolerate PPI's either.
Placed on low dose HC (compounded in acid resistant capsule) which worked well but over the years. I have accumulated more a.i issues, Sjogren's playing a big part now.
As a consequence, my HC dosage has increased significantly too.
I do wonder where PMR fits now and was not aware PET CT can show if still active - Sjogren's now doubt would show somewhere too I presume~
Yes,i did this before my synachten test for a week. About 5 rears ago. Test showed my adrenals were in a very bad way. Was told then to take 5mg pred going forward as my adrenals would be unlikely to recover. Have never been able to reduce since. I do have ME and fibro so that wouldnt help! Good luck, let us know how you get on.
Hmm - all very well if the PMR has gone into remission but there is absolutely no guarantee it has and in that case you may well experience a nice flare. HC has nothing like as strong an antiinflammatory effect as pred.
There isn't much to worry about in terms of adrenal crisis - the dose is the replacement dose. It is the PMR that may not play the game.
Might be worth asking for a CRP blood test to see if there is still any inflammation coming from the PMR (if your inflammation levels normally shows in bloods, not everybody's does)
A good sign, hopefully you're in remission and all you have to worry about is getting the adrenals going again. Keep us posted how you get on as this happens to a lot of people trying to come off steroids
hi that does sound scary but you would think the hydrocortisone will help you until they work it out for you . Wishing you loads of luck and hope to hear some good news shortly 🇦🇺👌🏻💐
I have Adrenal Insufficiency due to long term pred. This is usual procedure for cortisol tests as pred on your system will give an inaccurate result. You should be fine but Hydrocortisone does not have the anti-inflammatory effects that pred has so you might feel it a bit even it is RA. You can go back on it once test is done.
I am in a similar situation ie stick on 4mg but no suggestions about hydrocortisone or testing my adrenals further. My rheumatologist just said I would probably be in 4mg for life. But I would be curious to know whether the PMR is still active or not as I have stiff muscles in my legs but not 100 per cent sure of the cause. So at the very least you would be performing an elimination test!
First dose 10mg of hydrocortisone this Morning 8am , by 8:30 guts ache , dizzy , and within an hour diarrhoea, should I be concerned , got the next dose at 12, 5mg then another 5mg at 4pm , hope it’s just my body not used to a new drug and will adjust , got no way of contacting my Rheumy should the side effects get worse or even continue . I’m thinking stick with it over the weekend and hope my system adjusts . I was supposed to be having my flu and co-vid jabs this weekend I guess that’s on hold till this is sorted . 😩
Hi there - please be careful as someone who has adrenal insufficiency which is treated as Addison's - all the symptoms you are experiencing are in my opinion a sign of your adrenals needing help - please get help as it is very dangerous to allow your adrenal reserve to go down - your blood pressure will drop and that can be a serious situation. It is all very well for consultant's/medical profession to suggest these things but for them to do this without a contact for you to speak to if things aren't right - is in my opinion - very very wrong.
It might just be new medication… so maybe give it a couple more days…and definitely reschedule the jabs, and when you make new appointments have them done separately- 2 weeks apart.
I agree with posthinking01 - if this continues please don't ignore it and call 999 for help, explaining that you have the grounds for and symptoms of a threatening adrenal crisis. Bit late now - but NEVER start a new medication on a Friday because getting medical advice is tricky at the weekend.
Yes , I even thought about stopping the hydrocortisone till Monday and having my normal pred , then starting again , I have my adrenal test a week Monday at the hospital surely it would be out my system by then .
Well I would. the pred should be well out of your system after a week. And actually - I fail to understand why they think they need a level without pred. They should actually know how to interpret the results anyway - my granddaughter had it done on pred as it was far too dangerous to stop it. There was an endocrinologist in Fife who knew all about it.
I have already had the test done once about 3 weeks ago , I didn’t take pred for 24 hours then bloods taken 2 or 3 times with the med that works your adrenals in between , I didn’t get an exact number of the result at my appointment but was told it was low . Rheumy said They are doing it again to get a more precise figure before endocrinology will take over .
Without getting to involved scientifically in layman’s terms what’s the difference between pred and hydrocortisone, if hydrocortisone does the job is it just the inflammatory side that Pred deals with . ?
Though I am left to ask what there is that endocrinology can do. Of COURSE the synacthen test is low - you are a long term pred patient still on enough to suppress cortisol production. The only thing to be done is reduce the pred dose very slowly and in small steps over a period of many months to encourage your adrenal glands to take up the difference. The only other conclusion is that you need corticosteroid supplementation and don't bother tapering any further.
I have an interesting development on this subject of adrenal function tests, I have the test on Monday in the letter I received it said do not take any steroids in the 24 hours before prior to the test , as I am now on hydrocortisone 10mg morning , 5 mg at lunch and final 5mg at 4pm , and no pred , I was very concerned as only taking 10mg Equivalent to about 2.5mg pred 24 years before and not taking my other 2 daily does , I was potentially going to cause an adrenal problem especially as I’m told my adrenal function is very poor. I phoned Rheumatology and finally after 2 days have had a return call . The Rheumy said , on Hydrocortisone, I only have to not take the morning dose on test day, the day before take it as normal , his words , hydrocortisone does not have the same affect on the adrenal test as pred does so it will be ok to take the steroids the day before and it won’t affect the test results . I told him what the letter said and he said just do as he said. Any thoughts on this .
HC is out of the system sooner than pred - that's why it is used in adrenal insufficiency to provide more opportunity to poke the adrenals. The half life isn't THAT different at 1-2 hours compared with 2-3 hours but each dose is lower too while the effect lasts 8-12 hours. I must admit - although he may well be correct, I'd want to hear it from a member of the endocrinology team since they sent out the letter!!
Yes I would be concerned and you need advice pronto. You must be able to contact whoever prescribed the HC, maybe the consultant's secretary or your GP. if you can't get hold of anyone or feel worse or it happens again go to A&E and explain the situation as these are the same symptoms as an adrenal crisis. Better to be safe than sorry
Docs aren’t picking up , Rheumy help line doesn’t work any more , and secratary takes 7 days to reply , A&E is the only option if I need help . The symptoms started after I took the tablets , the Rheumy said yesterday, the adrenals will get the same amount of help on on 20mg a day of hydrocortisone, as 4to5 mg of pred , so I think if anything it’s hydrocortisone doesn’t suit me or it needs to adjust to a different med . All guess work thou .
No point us trying to guess what's going on, endocrinology is very complicated. Yes in theory 20 HC is the same effect as 5 Pred but if like you say the HC doesn't suit you or isn't working then Houston we have a problem and the specialists need to know about it. You would not be criticised if you went to A&E as this is potentially an emergency. When you have possible adrenal problems you would normally be given an emergency kit with a cortisol injection in it to have with you, so also ask about that, though in reality if you fear you are having an adrenal crisis best to ring 999, explain your concern and get the paramedics/ambulance personel to do it rather than trying to inject yourself.
Agree with the rest... I have SAI and there's a nurse I can speak to at both Rheumy and Endo clinics. I'm being guided through Covid and anti virals at the moment... it's important you have contact with someone 'just in case' ... best wishes to you 🙏
Thank you , people around me are aware of the adrenal situation and are vigilante for me , sticking it out for now just had my second dose of hydrocortisone 🤞
my mind is also thinking does your body need to go through a certain amount of discomfort as the adrenals try to work a little harder , and surely taking the hydrocortisone will not allow me to go into a full on crisis if the dose is high enough . Questions questions so much to think about . After 4pm today when I take my last 5mg of the day I have to go through till 8am toMorrow morning without a top up that will be the tester . 🤞
I have one more question , on the day of my Adrenal function test I was told not to take any steroids 24 hours before the test , as the hydrocortisone I am taking is staggered 3 times over the day , that would mean 25 hours before the test I will take 10mg of hydrocortisone which equates to 2.5mg pred and be expected to cope . Can I take the full daily dose of 20mg of hydrocortisone in one dose just for that day to get me through till the test, only having 10mg this morning knocked me about if I had to wait till tomorrow morning not sure what will happen.
Best of luck to you . I am back on pred I had the adrenal tests and they have basically packed up . Been told I will be on pred for life now and shouldn’t attempt to reduce from 4.5mg , seeing an endocrinologist at Christmas but Rheumy said it’s just to explain the management of my condition , haven’t got the figures yet on the adrenal function but I am guessing they very low . I’m stable on 4.5mg pred and 12.5mg MTX , just hope the long term effects of these meds aren’t detrimental to my health . Once again good luck to you 🤞💪👍🙏
I tried to reduce by .25 of a mg within 2 days I was getting very ill , tried to stick with it after 4 days I couldn’t function , I new there was something wrong to reduce such a small amount and get so ill . I asked for an adrenal function test and they Rheumy I had at the time said it’s not that but wouldn’t do the test , I went back to 5mg and was better within a week. I got a new Rheumy as the other took early retirement he did the test virtually straight away when I explained what happened and how long i had been on pred . Lo and behold the rest is history . Now it’s just a case of management not cure , annoyed and frustrated as you can imagine .
Doctors tend not to want to give an adrenal test until you are somewhat lower than 5mg as it can be a bit of a waste of time at that level. I was virtually comatose at 5mg! The important thing is not to try and reduce if you have the adrenals complaining.
I’ve been at 4.5mg for about 3 years now , I dropped to 2 mg at one stage in the past but I think my adrenals were actually trying back then . They phoned my and sent me a letter saying on no account am I to try and reduce even the smallest amount .
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