I wonder if anyone can explain a bit about the result of my synacthen test I had the other day, so when I see the doctor about it I understand the situation better.{ I got the result online].
A bit of background:
I was diagnosed with PMR in April, had magic reaction on 15mg Prednisone, pain disappeared immediately. After a month my doctor reduced the prednisone to 10mg. Then the deadly fatigue set in. The doctor put me back up to 15mg, then 20, but nothing changed for me. Then in June I had some odd symptoms, tingling at temples, so was immediately put on 60 mg in case it was GCA. A biopsy showed negative, and over a few weeks the strange feelings in my face subsided . I have been reducing the prednisone at 5mg a week since then, this week down to 20 mg, and will see the doctor soon to discuss where we go from here. All along I have felt pretty much the same, just very fatigued, no pain.
A couple of weeks ago I was seen by the general medical man at the hospital, as my doctor was worried about my level of fatigue . He ordered a synacthen test as he was concerned about the fatigue too.
So-- now I have the test results, 92 nmol/L with the normal range being above 400, up to 570. Would this be what you would expect for someone on prednisone for a bit less than 5 months?
Sorry this is a long post, but any thoughts would be appreciated.
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Tiredcat
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I can’t interpret your figures, but they seem understandable given the level of steroid you’ve been on. I have experienced sleepy Adrenals and they improved to normal when I got to 4 mgs. The fatigue is such a common symptom, I still have it even though my Adrenals are normal now. He was probably being diligent but my guess is that the test was too soon. Our Adrenals shut down when we are on over 7 mgs of Prednisalone and hopefully recover again when we are below that level. Do use a taper plan from now on, not more than 10% of your dose and look out for GCA symptoms which need to be treated as an emergency.
Thanks for replying Sheffield Jane, I always find your posts interesting and sensible. As I have said to Dorset Lady, the replies I have got here have stopped me panicking and made me realise all I have to do is stick to a slow taper and things will eventually come right.
I think I was sent to see this General Medical man at the hospital to make sure nothing else was the problem, but the synacthen test was premature at 20mgs.
Quick explanation - apologies if you know this already.
Once you have been on steroids for more than 3 weeks and at a dose higher than 7.5mg (which is equivalent to normal cortisol production by your Adrenals- called the physiological level) they temporary stop working because the artificial cortisol in your body (Pred) means they don’t have to.
That’s means in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena!
You tell medical people you are on steroids so they don’t suddenly stop them - that could cause a steroid insufficiency problem and your body would really struggle.
That why when we get low levels (around 7.5mg) we need to reduce very slowly to nudge the adrenals into working again.
There is no need for them to work until you get below the level that your body would normally produce cortisol - and that’s around 7.5mg - not necessarily exactly that amount for everyone - but an approx figure.
So bearing that in mind don’t see the point of having a Synacthen test when you are still on 20mg because they certainly aren’t working - and I’m not sure if the test can prove they are capable of working (which is all the test does).
I would say the fatigue is more likely to be as a result of the yo-yoing of your dose of medication and the underlying illness - whether that be PMR or GCA (which obviously was suspected if you went up to 60 mg).
You are less than 6 months into diagnosis/treatment and your poor body doesn’t know where it’s at!
Thanks for your very prompt reply Dorset Lady.I see from yours and the other replies that having the test at this stage was perhaps rather meaningless, and I conclude I am best to just take a very slow reduction approach from here on. So no panic about adrenals then!
I am in NZ so possibly there's not the same depth of experience of PMRGCA as in the UK. I did question the man at the hospital though of course he said he had treated many PMR sufferers.
Hi tiredcat, I have got to be honest I don't have any answers for you with this one.
All I can do is waffle on! The reason they usually wait until 3 to 5mg to do a synthacen test is to check and see if adrenals are kick starting once pred gets below "natural' dose of cortisol. I hadn't heard of someone having it at 20mg. I would imagine there should be little function of the adrenals at that dose and above for 5months. That might explain why your numbers are askew in term of your current relationship to reference range. Were they looking for something specific??
As I say this is a "guess" so take it with a pinch of salt. We were discussing how fatigue is a massive part of PMR and GCA. I hope someone can help you with a more fulsome explanation based on knowledge??!!! 🌻
Thanks for replying Poopadoop. As I have said above, I get the idea now, don't panic!
My doctor and the hospital chap both seem to have been bothered by me walking badly and using a stick, but from what I read on this forum this is par for the course. The fatigue is horrible but obviously I am not alone in this. This is where the forum is so reassuring.
Hello. Sorry you’re having to deal with this. I’m not sure where your doc is getting their information from. For one, the reduction was too rapid and not reflecting the usual pace. Why the dose was raised just because you had fatigue is confusing since both PMR and Pred will do this. Pred does not cure it, merely controlling the inflammation of the ongoing autoimmune attack which will burn out in its own time, so fatigue is part and parcel of it. Reducing in large jumps can also make you feel wretched due to withdrawal so you can see your water has been quite muddied by different things. Take a look at this to get an idea of treatment plans
The head symptoms may or may not have been GCA but using a negative biopsy as proof of no GCA is not normal either since there is a high enough false negative rate to make it unreliable. A positive result is proof, a negative isn’t, especially when you’ve already been on Pred for a while. The usual thing to do is treat the symptoms, not the result.
As for your Synacthen test, again I don’t know what they are on about. My Endocrinologist wouldn’t do a test above 5mg because the adrenals will be too sluggish and at 20mg they’ll be positively comatose. You wouldn’t expect any activity at all after about 3 weeks on your doses; it’s basic physiology. All the test does is dose you with a hormone like the one that comes from the pituitary that normally stimulates the adrenals to see if the they fire up. Well done for even getting 92. The adrenal function doesn’t normally come into discussion until you’re well below 10mg.
Yo-yoing of dose, moderate to high dose Pred, an autoimmune condition still cooking away, plus withdrawal due to a white knuckle ride reduction are ALL going to make you feel whacked out. Has your doc ever seen anyone with PMR or GCA? If your sugars are up that won’t help either but a strict low carb diet and low salt should stop this and the weight gain.
Others will reply so sit tight. Here’s another thing to read in the meantime.
Thanks for replying SnazzyD . I appreciate the reassuring and clear responses I have had so much. Your summary in your last paragraph puts it all in perspective. I can calm down and just stick to a slow taper from here on in.
Yes, given that you say you have been checked for the usual suspects causing fatigue it would seem logical as SnazzyD says that the rapid taper is likely the main cause. If your symptoms, other than fatigue, are now well controlled, a very slow taper such as one of the ones pinned on here next to the threads should be the best way forward for you. Good luck!
Our rule of thumb on here, which you can discuss with your doc, is reduce no more than 10% of your current dose in one go. Then allow a minimum wait of 2 weeks a) to get over withdrawal if you have any (usually kicking in about day 1-4) and b) to wait to see if any inflammation has built up which is usually delayed, though I found in the early weeks of GCA was within a day. What you are trying to avoid is shooting past the dose you need at any one time, having no idea where that is and having to potentially over shoot on the way back up to a dose you don’t need.
The lower you go the longer you take so for example once below 10mg I dropped 0.5mg every 6-8 weeks and below 5mg 0.5mg every 8-14 weeks depending on how I felt due to low adrenal symptoms. Those with PMR also have their pain to go by too but with just GCA I can report that withdrawal can be pretty achey but it’s more of a general fluey ache from what I can tell. There are lots of plans and opinions so you have to find what suits you and of course keep your doc happy.
Thanks again for taking the time to give your clear and sensible information SnazzyD. I am determined to stick to the slow reduction plan from here on in.
The man at the hospital I saw (not a rheumatologist, though he said he had treated many people with PMR), emphasised that I must get off Prednisone as quickly as possible, that I should go on methotrexate to help speed reduction up, ordered the syncathen test I have asked about above, and said my muscles were going into myopathy and I must exercise more, though exercise is really difficult with the level
of fatigue I am experiencing. I just don't think he was on the right track.
When I see my doctor in a week or two I will tell her I want to take the slower path which all you people have suggested.
"I just don't think he was on the right track". You are so right and there are so many of them.
Hopefully this project will help, it does not start till 2020 and the outcome will be late 2022 or 2023. As PMRGCAuk North East Support, were closing down in October 2018: We asked our sister charity to continue:
"We ( PMR & GCA uk North East Support had been approached by Queen Elizabeth Hospital Rheumatology Dept for funding of £10,000, to cover 2 years for training GP’s in the North East & North Cumbria specifically in relation to PMR & GCA. We asked that PMR GCAUK fulfil this request and they have complied."
We just have to keep pegging away and try and educate our own medics as much as possible. There are over 800 Orphan illnesses, most of auto-immune.
I am at a much lower dose than you, well below 5 for several years. I have never asked for nor been offered synacthen test, but a few months ago when I complained of fatigue my doctor ran what she said were the basic tests to investigate cause - I don't remember them all but they included thyroid, electrolytes and iron, and all that was amiss was the iron, which I've had problems with over many years anyway. Taking liquid iron supplements for about six months and actually feeling better. Did your doctors run these basic tests?
Thanks for replying HeronNS. Yes, I have had every test known to man, I think. The inflammation markers were up at diagnosis, but went down quickly once I got onto prednisone. Before this I was pretty healthy and fit, good diet etc.
What dose of pred were you on when the test was done? The results are pretty meaningless unless you are well below 10mg - of course your adrenals won't produce cortisol if you are on pred - and any doctor should know that. And that has nothing to do with knowledge about PMR... I see it was 20mg - pointless!!
Thanks for that PMRpro. Yes, from what everyone on here has said the whole thing has been pointless and certainly undermines my faith in anything that doctor had to say.
You’ve been through the mill Tiredcat and thankfully have received lots of good information on here. My Rheumy/ GP won’t hear of having a synacthen test at 4mg never mind 20mg! It’s clear you are more relaxed now and you’re confident in what you need to do next re your taper. See you’re GP and keep h/her in the loop as you reduce
My doctor wouldn’t allow me to have this test until I got down to 2 mgs. The specialist gave me about 6 weeks to get from 4 mgs to 2 mgs, and luckily the reduction went smoothly. And test results were ok.
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