Just had a confusing telelphone call with endocrinologist. I had my second short synacthen test a few weeks ago. It showed adrenals not working. I am on 5mg of pred. The test was organised by rheumy when I got down to 5mg. Todays endocrinologist said 5mg was too much and adrenals would not wake up on this and was discharging me back to rheumy. When I asked if I should reduce the pred he indicated that was for rheumy to decide. My next appt with rheumy is in November. He also muttered about hydrocortisone when I said that the steroids had caused me a few problems, reflux and osteoporosis + fractures.
At the end of 10 minutes he just said goodbye and hung up!
So is 5mg too much, should I tackle the rheumy helpline or just wait till november?
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Cally55
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I don’t know if Endos and Rheumys ever speak to each other. They often have different paths to a similar goal (zero Pred) but for different reasons.
From the Endo’s point of view, 5mg is still too high a dose for your adrenal glands to show any meaningful activity. This because there is enough artificial ‘cortisol’ (Pred) for the adrenal glands not to have to think about making their own so they become inactive. The Endo needs you to be lower in Pred because a lower dose will force your adrenals to work because the brain keeps being told “low cortisol, make some!”. For you and many others 5mg is still too high for that message to start firing off. He sent you back to the Rheumy to get lower on Pred as your PMR will allow. My Endo wouldn’t do a Synacthen above 4mg for this reason as they saw it as a waste of time. Why yours was tested at 5mg I don’t know.
My experience of Rheumys over the years is that they don’t really understand adrenal function in anything other than a basic way. I’ve had a couple talking about hydrocortisone as if any hope of better function was gone. In actuality it was that the Pred dose was still suppressing the adrenal axis and the low function is expected. Similarly I’ve heard of Endos telling the patient to stop Pred because all is well with the adrenals when their PMR is still active.
So, in short, you need to be on lower dose of Pred for the Endo to see a return of adrenal function but the Rheumy has to reduce that in accordance with your PMR. I’d say PMR trumps adrenal function and you deal with that as and when the dose lowers. When you are at this dose stage that is too high for the adrenal glands to think about working but the Pred is too low for you to go about your day without feeling tired, you can feel dreadfully tired. Have you read the FAQ’s adrenal section here?
It is quite simple - if you need pred long term for something inflammatory, as long as you are above about 7mg per day the adrenal glands do not produce cortisol as the body knows there is enough corticosteroid to function and no more is required. As you then reduce the dose to a lower level, eventaully the body registers that fact and sends signals to the adrenal glands to produce cortisol in the morning.
Being on a dose of 5mg is still plenty to suppress those signals so there is no point at all in wasting time and money on doing a synacthen test as it will show you have no adrenal function. It isn't that there is anything wrong - just you are on too much pred for the system to wake up yet. And the rheumy should know that - most don't though.
Have you been tapering your dose? Is 5mg the dose that manages your PMR/GCA? I know you had a flare recently - that will have made it less likely your adrenal function would wake up at this sort of dose, even a couple of weeks at GCA doses disrupts any recovery there may have been.
No point contacting the rheumy unless you need instructions to taper the dose - and as you know by now, that all depends on your underlying autoimmune disorder which a few months ago was definitely alive and kicking as the GCA flared.
There is no point at all the rheumy repeating the synacthen test until you are down to 3mg and steady at that and even then some people still have very poor results. But you have to get to that sort of low dose without the PMR/GCA flaring up before you can even think of getting lower.
Thanks all. What I don't understand is why the endocrinology department told me to book a test when I got to 5mg, now a different one is saying its a waste of time. I think I had better see if I can get an answer from rheumatology about dose. At the moment I don't have any gca/ pmr symptoms so I feel I could try a very gradual taper.
Depends who you spoke to probably. The rubrics say 5mg and under - experienced endocrinologists know that at 5mg it is very unlikely to be positive and many set a threshold of 3mg for a synacthen test so it depends on which endo is asked.
If you have no symptoms then you should really be attempting to taper 1/2mg at a time, if you don't try you will never know if the PMR/GCA is quiet enough to get to a lower dose.
My adrenal function took until 1.5mg to be ok enough to have mostly good days on a normal day, nothing too strenuous. Why stop suddenly? What’s wrong with just tapering off slowly, 0.5mg at a time? Beware adrenal crisis can occur out of the blue if you are put under some sort of extra physical or emotional stress.
I left a message with the specialist rheumatology nurses and just now I had a phone call from one of the team, a junior one I think. He wants me to continue on 5mgs but will check with the boss. He really called to discuss me having a temporal artery biopsy which was suggested a while ago. We agreed there was not much point with me on 5mg. However I am on the list for an mri of the front part of my head to see if there is some non gca cause of my headaches, and a referral to neurology.Consultation with two doctors on the same day, is this a record?
Part of the problem is only talking to the consultant every 6 months and the waiting times for tests.( eg I had an mri on my back a couple of months ago for a "new" fracture in march 2022. I have not yet had the result or another consultation with spinal orthopaedics. Its looking like I shall talk to them at least 18 months after that fracture about a scan that is months old!)
I think the rheumatologist wanted me to stay on 5mg for a while starting ages ago. The last appt with her was all about romosozumab for my osteoporosis, there wasn't time for anything else.
My last dexa radiographer said couldn't do my spine as I have collapsed vertebra, so she just did hip. I haven't heard the result yet but I don't expect it to be very useful as my hip score wasn't too bad last time. I was very much put off surgery by the spinal orthopaedics team. I am not sure the NHS does it now anyway.
So frustrating … so MY Rhuematologist did a Short Synacthen when I was on 6.5mg . Stopping for 30 hours prior, his explaination was NOT to see if my Adrenal’s were working but if they were actually capable of working . This made sense to me at the time and his letter to me said the test produced a “normal “ result !
I am now on 5mg and as mentioned before am really struggling with what I think is my Adrenals trying to kick in , guess that’s a good sign , I see him in 2 weeks and will drill him down on what he actually means by normal , he didn’t add the numbers to his letter .
I think as many have said each Speciality seems to come from a very different starting point .
Now I'm curious! Wat happened? I am in a similar position currently on 4mg and occasionally 3.5mg but feeling that is a bit low so I flip back and forth, a few days at 3.5 and a few days at 4mg. I just had a synathacen test which showed 368 at 30mins and 438 at 1 hour. The rheumatologist said that like to see 450 at 30 mins. I thought it might have been lower, (ie 438 didn't seem too far off to me) so I was quite pleased. He was more cautious saying that I might never get below a long term dose of 3 or 4mg, although I might. We agreed that it was best to stick at 4mg for a while and see how things go, not to rush it., though I am a bit inclined to try and trick the adrenals into action in the way you have. As @PMRpro says, 3mg is still enough to let the adrenals nap
He’s saying that because your body produces approximately what 5mg prednisone will do so you need to drop down extremely slowly at the rate rheumatology tells you, from my experience 3mg is low as they want you to go to get your adrenal glands functioning again. Don’t make the mistake I did, as I got down to 1mg thinking they must be working now. Nope and now I’m in so much pain switching to hydrocortisone, I may have to take a half of prednisone I’ve never hurt this bad before
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