SST Test

[ignatz]

I have been booked in for SST Test for Cortisol in a months time- mid June. Told to stay on my current 5mg. I feel terrible and now realise that I last felt fully functional in mid January - 4 months ago when I was on 9mg! Felt reasonable at 8mg two months ago but endlessly reducing as 'my' rheumatologist remains concerned at cumulative side effects of bone loss and possible loose teeth after 3.5 years and my 12,400mg intake.

"a short synacthen test (SST)......It is a test to check the amount of cortisol in your body and to check how well your body can produce cortisol."

Anyone with experience of this?

Is the only way to get natural cortisol production restarted to wait ........forever?

[PMRpro Ambassador]

"Is the only way to get natural cortisol production restarted to wait ........forever"

The only stimulus that works is there being a low level of corticosteroid in the body at midnight. If the adrenals are CAPABLE of producing cortisol it doesn't usually take forever - but it can take a long time.

[ignatz in reply to PMRpro]

".... a long time"? Like.......a century? 10 years? more than 10 days?

[PMRpro Ambassador in reply to ignatz]

More than 10 days - but not usually 10 years. It's a how long is a piece of string question.

[ignatz]

I must hope that moths will eat my string.

[DorsetLady PMRGCAuk volunteer]

I think many people would feel a bit rubbish reducing 1mg a month around those doses - took me 8-9 months to reduce from 6mg to 3mg.....

Similar timescale but higher cumulative dose than yours...and I’m still walking, talking, got all my teeth and breathing 5 years on... some Rheumies do get in a panic....

Have a read of this - healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to DorsetLady]

Aye - forgot to mention - I'm still upright and not crumbling on a a cumulative dose of WELL over 20g!

[ignatz in reply to PMRpro]

My rheumatologist was horrified that I had gone back up to 20mg/ day during last Summer! She demands that I 'stop larking about' * and carry on with reduction...but now I must get/stay at no more than 5mg until after the SST test. My only relief is to be paracetemol (up to 4,000mg daily!!!!) , hot water bottles, alcohol- although she wants me to stop the last. Have already given up smoking over 6 months ago. Must take up....gambling?

* this is my term for her advice- although by now I cannot remember exactly how she put it....essentially that I was not treating the pills with proper seriousness and due reverence.

[123-go in reply to ignatz]

Maybe take up looking for another rheumatologist who understands PMR and takes your concerns more seriously. Larking about? Shameful attitude!

[DorsetLady PMRGCAuk volunteer in reply to ignatz]

She sounds a really considerate lady!

I’m sure some of these Rheumies think we take Pred for fun...well, actually, no we don’t.....

are you allowed to keep smiling? 😉

[ignatz in reply to DorsetLady]

I try to keep a straight face (but seldom manage

[PMRpro Ambassador in reply to ignatz]

What a delightful person - I hope she develops PMR one day. With a Long version.

Does paracetamol help at all? Though since she is telling you to use the maximum dose - which is too high for elderly patients (sorry, 64 just gets you that moniker), 3000mg is the recommended max for us - please pass on the alcohol for the moment. Are you still on methotrexate?

[ignatz in reply to PMRpro]

She did say that 4000mg is the maximum recommended AND that one should avoid getting to such high levels if possible as liver damage may result. I don't think Paracetamol helps much but I avoid taking more than 1000mg at a time. Stopped Methotrexate over a year ago as it seemed to make little difference to my Steroid needs.

[PMRpro Ambassador in reply to ignatz]

At our age 3000mg per day is the maximum recommended and you should never drink alcohol when taking paracetamol. Paracetamol does nothing for my PMR pain and not a lot for anything else!

[Longtimer in reply to ignatz]

I suggest you tell her PMR is no lark either....where do they get their ideas from, having never had PMR themselves!...we are all different and respond in different ways to disease and meds....well that`s my rant for the day!....

[ignatz in reply to Longtimer]

She does seem to now worry about my cumulative dose and osteoporosis- although my last test suggested 'only' 6% increase in bad fracture likely within next 10 years.

[ignatz]

I may be rushing......

[123mossie]

I’d agree, find another rheumy, pmr is quite enough to deal with!

[ignatz in reply to 123mossie]

I suspect that NHS provision is not excellent for choice of Specialist. I do worry (a little) that she will have a nervous breakdown. She does seem to be terribly overworked- or taking it all far too seriously.

[Rugger]

I had a Synacthen test 8 months ago which showed that my adrenals were sluggish! Before that, I had a 9am cortisol test at my GP's surgery - just a blood sample taken before you take your pred dose - at least 24 hours without pred, same as for the SST. Have you had that done?

My cumulative pred dose is similar to yours - 12,947mg to date, since 2016. My Rheumatologist has (happily!) kept me on 5mg for the past 6 months and I'm also on Tocilizumab, as I have GCA-LVV as well as PMR.

Have you looked into seeing A N Other Rheumatologist? Where are you in the UK? I'm sure people on here would be able to recommend a more sympathetic Consultant. If stress is one of the contributory factors to your condition, you can do without being told you're "larking about" when all you're trying to do is control the pain.

[ignatz in reply to Rugger]

I recently did some blood test with no Pred for 24 hours beforehand. My result was about 10% high on Thyroid stimulating hormone which I Googled to find that it suggests my Cortisol level is low.

[Rugger in reply to ignatz]

That's interesting. I don't think I've had my thyroid function tested in over 5 years!

[powerwalk]

Yes a fair few of us have has Synachten tests with varying results. Mine showed I have no adrenal function and Endo consultant was not very hopeful of them returning. I'm on pred 5 years. (On 5mg though have been lower) I am hopeful they will return at some stage though I do feel pretty crap. I had hydrocortisone instead of pred for the seven days before, with no pred or hydro for 24 hours just before the test. Please do let us know what fun you are having there with your "larking about" cos I could do with a laugh!!! Though it did make me giggle. Good luck with it and let us know how you get on.

[ignatz in reply to powerwalk]

I have now enlarged upon my 'larking about' note. Always best to laugh at setbacks (otherwise we will be crying before bedtime.

[powerwalk in reply to ignatz]

Too right!!!

[ignatz in reply to powerwalk]

A PMR, a GCA, and a RA limped into a bar.......