I am a 61yr with PMR for the last 3.5 years. I have used the tapering regime and on my second attempt got to 3.5mg (have been around 10mg for about 2 years). Half way through the 3.5mg to 3mg period I was hit with constant nausea, some vomiting, abdominal pain and feeling generally unwell, fatigued and ill.
I have been through similar milder versions of these symptoms.but waited it out; not reduced, stayed on current dose for a week or 2 then carried on, so felt very good at getting down to 3.5mg-3.mg. This was so much more intense, I called the rheumatology helpline and the specialist nurse spoke with the consultant who suggested a synactin test to assess the adrenal function. I was advised to stop my steroids for a week, as you can imaging I was quite alarmed and questioned this advice, as I am a nurse myself and aware no sudden stoppage of steroids. I checked this out on other hospital websites and found I should only stop for 24hr, which is more realistic. Went backto the helpline and confirmed they had made an error, and now submitted a complaint about this, as the consequences could have been quite drastic and (not everyone would have checked this out).
So my question is, I was told not to change my dose of steroids, as I was home alone for the weekend and was feeling so ill, I increased my steroids by 1m which gave me the relief needed to dog walk etc, whilst hubby was away. I plan to drop down to 3.5mg tomorrow but feel so so scared of how Ill I felt.
Would increasing my dose this week affect the synactin test, considering that the test is done after no steroids for 24 hours?
I welcome your advice.
Thank you. Sue
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That wrong advice was criminally negligent. How shocking! Glad you are making a formal complaint for the sake of others.I don’t know the answer to your question. From my own experience, my Synacthen test at 5 mgs showed a really inadequate performance from my adrenal glands. At a slightly, later date I had a test at 3 mgs and this showed a complete recovery of my own Adrenal gland function. Good luck!
Thank you Sheffield Jane, that was amazing that your adrenals were good at a lower level. If I know my adrenal function is good, then I will just have to work through it; maybe reduce by one day every 2 weeks. Thanks again
They only start working when the lack of cortisol is sensed by the system. It is a sensitive, complex system as you will be aware. The best bet is a really slow taper. Extra Pred may spoil the result of a Synacthen test. My Endocrinologist was keen to swop me to hydrocortisone to help my adrenal function ( before GCA was added to my PMR diagnosis). He will do this again when I get to 5 mgs ( currently 7 mgs).
Hi SheffieldJane., thanks for your reply. I’m have done a lot reading on the hypothalamus-pituitary-adrenal feedback process, so now have a good understanding, but I did not want to remain on the 3mg as felt so so ill. I am a not a good ill patient, as my husband says. We will see what this week brings.
It shouldn't make any difference if it was only a few days. All it does is show if your adrenal glands CAN respond when kicked - it doesn't show if they are actually responding in the complex multi-step natural feedback set-up in the body when you are unwell or under other stress as there are so many factors involved.
People have reported some very concerning bits of information obtained from rheumy helplines recently - if I remember rightly, one told patients to stop their pred because of Covid. Er - no, not for PMR/GCA patients ...
Thank you PMRpro, I felt it was my duty to complain to ensure he did not say the same to anyone else. I also asked for a hospital datix ‘near miss’ to be logged and retraining/update for the specialist nurse. I was a specialist nurse at one time and then a consultant nurse, so know exactly how things should be. It does worry me the mis-information that is given out.
When you consider that they felt it necessary to introduce a new steroid card a couple of years ago because of lack of awareness on the part of HCPs regarding long term steroid treatment - you are left to wonder how much THAT has achieved!
The advice was inexcusable given steroids are the bread and butter medication in Rheumatology and I hope it is found whether it was a case of Chinese Whispers or incompetence. As I see it, the test is to confirm whether your symptoms are indeed from adrenal insufficiency and it certainly sounds like it. If your Pred increase has stunted your adrenal function the test will be low. If you hadn’t increased and your adrenal function is poor, the result will still be low. What may be significant is how low and the repeat further down the line becomes important. At 4mg (the Endo’s max dose to do it) mine was not very special but at 1.5mg it was much improved. I could tell without the test because I didn’t feel grim 24 hours a day, day in day out. I struggled with regaining my function and it was necessary to reduce by 0.5mg introduced slowly over anything from 6-14 weeks. I even ended up chopping up 1mg tablets into quarters. The main thing was I had to try very hard not to challenge my body physically, mentally and emotionally in order to avoid going bust on cortisol levels. I opted for do less and take less if possible. It was difficult because I had two older teenagers, husband working long hours, dogs and a live in vile father-in-law. This meant I got through household chores and that’s about it. The Endocrinologist was of the opinion that 1mg per month to zero was fine so I had to put my foot down and say that that was not compatible with surviving at home. I did not increase the dose unless I was in crisis and certainly not in order to have a better day unless it was totally necessary. I have been off Pred since August 2020 and have had 4 crises after prolonged acute stress over a 24 hour period and just hit empty.
If your test is normal, it doesn’t say if you can produce the goods at all times, especially during high demand. If it is really low and you are struggling, they might decide to give you a shorter acting top up of hydrocortisone to keep you upright.
I’d say don’t over think it and look hard at your daily routine in case you are like me that you’ll only get over this hump by not asking too much of your adrenal axis.
Thank you SnazzyD, good news you are the pred. I will go back down to my 3.5mg tomorrow and having the synactin test in Thurs, so will see how I feel. I am not doing anything to stress me out, as now retired, only doing a little on-line work as and when I I want to. My very bad few days were absolutely awful and my husband knows that I do not complain, so when I take myself to bed, he starts to worry. Let’s see what the week brings. Thank you agin for your story.
Took my adrenals about 8-9 months to start functioning (between the doses 6mg down to 3mg) - but fortunately I only suffered from random bouts of fatigue not the full range of potential AI symptoms you describe.
Hi Dorset lady, having read the symptoms, I did tick a few of them, constant nausea, reduced appetite, abdominal pain and vomiting were my worst with extreme fatigue. I also had very low mood, looking back now. So in reality my drenals may have been stepping up partially already My hubby was going away for the 2 days and I extremely concerned how I would cope with dog walks etc. We are currently dog sitting 2 very large black labs, so had been as good as I could. Feeling much better now, but will reduce to 3.5mg tomorrow for the run up to the test. Thank you for the information,
I developed adrenal insufficient due to my pred use while I was taking it for PMR. It really hit me hard. The neasuea and vomiting you're experiencing is typical of an adrenal crisis. Therefore, stopping it could send you overboard and actually kill you. I'm glad you followed your own feeling about this. The low dose of pred your on will not even be in your system by the time you have your appt. Most of us with AI have to dose every 4 hours because the steroids just don't stay around for long. I would think though that you might not want to take a dose before your stem test but should be able to take it right afterwards.
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