Synacthen test

[Peep44]

I am on 5my of Prednisone. I want to taper. I had to have a Synacthen test. Apparently my synacthen test result was blunted. What does this mean? I won't be able to taper my prednisone down. I was told my adrenals will right themselves in time. I have a review in 3 months. What does blunted mean?

[SheffieldJane]

You need the advice of your lead physician. It may be that you stay on the relatively harmless dose of 5 mgs for a few months. I would hope that it’s good news and means that your own Adrenal glands are still capable of producing adrenaline but they are not doing it efficiently yet. I wonder if alternate days of 4 mg one day and 5 mgs the next, would stimulate them? Or moving your time of taking Pred until bedtime? Good luck! I would take it as a “ to be expected” normal thing. An Endocrinologist referral might be indicated.

[Peep44 in reply to SheffieldJane]

Thanks for the reply. I won't see my rheumatologist for 3 months. He ordered the synacthen test. I haven't been referred to any other specialist. I suppose I would have to have another synacthen test to see if my adrenals are ready. If I have adrenal insufficiency, would there be any obvious symptoms?

[SheffieldJane in reply to Peep44]

Fatigue and nausea mainly I think, possibly kidney pain. Do you ever get bursts of energy where you almost feel like your old self. I do, very occasionally - on-line shopping not recommended at this time, especially not the Lego shop, or is that just me?

[PMRpro Ambassador]

It probably means that the response was lower than would be normal (blunted) but since you are still taking 5mg pred that is to be expected - however, it was enough to show the adrenals are able to function and produce cortisol. They expect that with slow tapering they will recover and produce the amounts required.

I think as long as you are on 5mg the situation will remain about the same - you will need to reduce the dose slowly to get the amount of cortisol made to top up to increase.

[Peep44 in reply to PMRpro]

I won't get to see my Rheumatologist for 3 months. Public health system. Arrgghh!

[PMRpro Ambassador in reply to Peep44]

I don't think that matters. Dr Rod Hughes likes to keep patients at 5mg for up to 9 months to allow adrenal function to catch up and settle down - 5mg is enough to prod them to wake up but a safe enough dose in the meantime.

[Peep44 in reply to PMRpro]

My hair is falling out. I don't know of it is the prednisone or the Leflumonide I am taking. I want to taper sooner rather than later!

[SheffieldJane in reply to Peep44]

Far be it from me Rod Hughes etc....but do you really need to be taking the steroid sparer Leflumonide anymore? I would be pretty content at the relatively benign dose of 5 mgs of Prednisalone? Were you properly stuck before it?

Both drugs have hair loss in the side effects. Hair loss if often more apparent after a period of physical and emotional stress. Perhaps at this stage a hairdresser ( good one) could advise about cutting, styling and products.

It sounds like you might be on the last lap, try not to be impatient, done right will make all the difference to the permanence of your recovery. Wishing you the best, you can do it.

[Peep44 in reply to SheffieldJane]

Hi. I don't have PMR. I have seronegative RA. The prednisone was to calm the inflammation until the Leflumonide kicks in.

[SheffieldJane in reply to Peep44]

Sorry for assuming! Best wishes.

[PMRpro Ambassador in reply to Peep44]

How long have you been taking leflunomide? Did you take pred on its own before?

I fully appreciate you want to taper sooner rather than later - but you may well find being patient for another couple of months allows you to steadily reduce afterwards. If you reduce and fail and have to go back up, you may take longer.

However - if you want to try a 1/2mg reduction now there probably is no reason why not. Just be aware of any increase in symptoms or fatigue. As I explained before, you were told function will return in time - and that is the reason for going SLOWLY. If you rush you are likely to fail.

[Peep44 in reply to PMRpro]

I began prednisone 20mg by itself. After a couple of months I started Methotrexate. This is when the hair started falling. I stopped the Methotrexate because of this and other effects. I had 4 weeks after the Methotrexate with just prednisone. The hair did not stop falling. I then started the Leflumonide, and the hair is still falling. I would like to stop the prednisone because of the hair and other side effects. I can't reduce even if I want because I need 1mg pills.

[PMRpro Ambassador in reply to Peep44]

It has taken several weeks after stopping mtx for my hair loss to calm down to where it was before. If leflunomide also causes hair loss there probably is nothing you can do except stop it and hope. But It is also perfectly possile to reduce pred dose without them - if you go about it the right way. Going slowly is critical and most of the flares so many doctors seem to think are inevitable are due to trying to reduce too fast and too far.

[Peep44 in reply to PMRpro]

Leflunomide is for Seronegative RA. It is the last D-MARD for me to try. I don't qualify for the next stage/type of RA medicine. It's like I am stuck with it or risk not being medication. My CRP went up to 52 between Sulphasalazine and Methotrexate.

[PMRpro Ambassador in reply to Peep44]

Surely, if you have worked your way through all the DMARDs and failed them - you must qualify for the next level.

Sorry about the confusion - I tend to assume everyone on the forum has PMR/GCA.

[Peep44 in reply to PMRpro]

I was told I didn't qualify. I didn't ask why. I probably need to have xrays with joint damage etc. I assume I am not bad enough. Health system sucks.

[York54]

I had my synacthen test a few weeks ago, requested by my Rheumatoligist. The letter back from the endocrine nurse said I spiked at 412, at best it should be 450?...????? No idea what that means, don't see the rheumy till October. I'm on 5 mg of Pred. Added at the end of the letter was , " please contact us if you wish to reduce this dose". Presume this letter went to both GP and rheumy!!

[PMRpro Ambassador in reply to York54]

It shows your adrenals are capable of producing cortisol but they aren't producing as much as they would without you being on pred - someone with normal adrenal function would have a level over about 600. I imagine their comment is so that they can give you the pep talk about how to go about reducing and still maintaining a safe status - avoiding stress and knowing what signs to look for. 5mg is a fairly safe dose in the meantime but lower may not be until the adrenal glands get their act together which may take a variable amount of time.

[York54 in reply to PMRpro]

Yes, I was given a leaflet about " sick days". That is , increasing the dose if unwell etc. I shall stay at 5 mg until I see rheumy in 2 months. Still have days when I feel shattered, especially at the moment after entertaining our Ozzie friends for a week!!

[PMRpro Ambassador in reply to York54]

Yes, I would stay at 5mg for now - Rod Hughes keeps his patients at 5mg for up to 9 months and finds that helps the rest of the reduction.

[Peep44 in reply to PMRpro]

I knew you guys in this forum would be the best to ask. Getting more info out of you than my doctors!

[ConventCassie in reply to PMRpro]

My Rhummy kept jacking me back to 5 & I couldn’t understand why. What does this synacthen test look like on the lab work I get to see now?

[PMRpro Ambassador in reply to ConventCassie]

It won't be amongst the usual tests. It has to be ordered and takes a few hours - done at 9am after not having taken pred for 24 hours, baseline blood sample taken followed by an injection to stimulate the adrenal glands and then another blood sample taken after half an hour and usually another one or two times.

[ConventCassie in reply to PMRpro]

Thanks. I remember now. It was complicated.

[Cinka in reply to PMRpro]

Is Synacthen test par for the course and what are the logistics? I'm not there yet, but do we ask for a test once we reach 5mg? - want to be prepared!

Thanks! 😊

[PMRpro Ambassador in reply to Cinka]

It isn't really par for the course and most doctors will say that if you keep reducing your pred dose and feel OK overall, there is no need. They have claimed it is so rare it won't happen to you. However, we have had several people whose adrenal function hasn't returned and who have had to stay on pred - out of a few thousand people that isn't that rare and our medical superintendant at the local hospital did say he was surprised but accepted maybe it did happen more than he thought. There have also been a couple of people who felt fine even at low doses of pred but whose rheumies did do synacthen tests as routine - and found they have no residual adrenal function after all! One lady felt great on 2mg - but has no adrenal function! So it isn't guaranteed to manifest.

There isn't a lot of point doing one before 5mg and lower is better we are told. But always worth asking if you experience increasing fatigue as you reduce the dose and slowing the reduction down doesn't result in an imrovement in how you feel. One top PMR rheumy likes to keep patients at 5mg for up to 9 months to encourage adrenal function to pep up and it seems to work and make the rest of the taper go better.

[Cinka in reply to PMRpro]

Thanks for that, PMRpro .. Slowly she goes .. ! 😊

[Peep44 in reply to York54]

A leaflet! I have sent another email to the rheumy nurse asking for more info, but no reply. You have it better in the UK!

[Peep44 in reply to York54]

That's good information. I was told that after my synacthen test I would be able to taper and he said he would prescribe me some 1mg pills. I heard nothing for 3 weeks and then I emailed the nurses just to be told the result was blunted. No numbers or levels etc. I was to stay on 5mg until I see him next in 3 months. No tapering plan etc.

[York54 in reply to Peep44]

I would stay at 5mg till your next visit Peep.

[Peep44 in reply to York54]

Thanks York.