End of pred effects

[Barcelona1962]

I'll tell the full story another time!

But for now I have just finished pred for suspected PMR/GCA/and actual arterial retinal vasospasm which started some 4 years ago - and I have tapered down from 60mg way back then when I was losing sight in my right eye every few hours for 2 weeks to 1mg every 4 days over the last month or so.

Over the last 2 weeks I have had variously... a lot of general tiredness; some low to high and general feeling of dizziness; a bizarre and one-off fainting incident; itchy legs (tired/dead legs going to sleep); arthritic feeling hands; pins and needles in left arm sleeping (waking up); daily diarrhoea which has been exacerbating bad and unusual abdomen pain over the last 7 days; some wake up jaw stiffness and some streaming eye in the am.

In time-honoured words - is this normal (coming off steroids?)? I have been to the doctor who is running blood tests and am contacting my excellent rheumatologist today with the above news!

I do suspect this is the next stage in what has been a very long road! Thanks for any thoughts/shared experiences.

[PMRpro Ambassador]

Well, not sure NORMAL is the word I'd use but possibly to be expected!! It sounds like signs/symptoms of adrenal insufficiency - but surprised if it has only appeared after being down to 1mg every 4 days and stopping!

How slowly did you taper from 2mg? Did you have a synacthen test done to assess your adrenal production of cortisol? Even a basal cortisol would do - cortisol level done on a blood sample taken between 8am and midday - that is the most important blood test the GP can do and is easier than a synacthen test that must be done in hospital'day clinic.

[PMRpro Ambassador in reply to PMRpro]

PS - did you increase your activity, have you been under any other stress than that of Christmas etc though that is considerable for many?

[Barcelona1962 in reply to PMRpro]

Many thanks for this!

I was on 2mg back in September and then went to 1mg every 2 days, then 3, then 4 and now stopped (as directed by the rheumatologist).

I went to the GP about a groin strain/possible hernia (!) on Tuesday this week and he ended up being more interested in the other stuff so we took blood at 10am Thursday but hje was looking at "renal activity" so hopefully that covers what you are suggesting below? If not I will suggest the below to my rheumatologist who is back on duty Monday...

I was ski-ing over the Christmas period (very unusual for me but an offer we couldn't refuse) hence the groin strain and maybe some of the general tiredness etc you are hinting at! It may all be stuff of nothing but as I was finishing the pred I thought I would ask the group. I have been following it since it all started but never posted! The full story is a cracker....

[PMRpro Ambassador in reply to Barcelona1962]

Too fast - and it is catching up with you now - probably triggered by the excitement of skiing and travel and all the other lovely stuff that is still stress.

At 2mg it is likely that there was still some suppression of adrenal function - some fairly recent work from Imperial London endocrinlogists suggests that the formerly accepted physiological level being about 7mg pred, it is much lower. So 2mg was providing all you needed for general day to day living. It is suggested that the return of adrenal function can take a month for every month you were on pred, up to about 8-12 months where it levels off. and it is well known that adrenal function isn't stable and normal for up to a year after stopping pred altogether, So I would have said your final stage of tapering should have been over months - not the weeks suggested by your rheumy. Almost all of them underestimate how long you need - and a study in Leeds in PMR patients showed just that, Unfortunately, it wasn't published that I know of.

So - all SnazzyD has said included, including not RENAL but ADrenal status, you are wobbling a bit in terms of adrenal insufficiency but not presently dangerously so. You need cortisol in daily life and in bigger dollops for more exciting days, exercise, illness and injury and healing of injury and currently your adrenal function is struggling. Keep some pred to hand and if you feel worse or show signs of an adrenal crisis - really unwell, confusion, overwhelming fatigue, dizziness, profuse sweating , nausea and vomiting - take 10mg if you can and get someone to call 999 saying potential adrenal crisis.

I'm not saying this to be scary or dramatic - but so that no-one does have to get dramatic!!

[Barcelona1962 in reply to PMRpro]

Great and obviously very well informed info/feedback - will speak with both my GP and rheumatologist on Monday! Thank you!!!

[SnazzyD]

As an end stage reduction, it still sounds a bit precipitous to me and I certainly wouldn’t have managed it. Rheumatologists often aren’t as clued in with adrenal insufficiency from what I experienced and have heard from others here. The skiing on top is a massive pressure on the body if it can’t produce cortisol reliably.

There is a big difference in blood tests between renal activity and adrenal activity. The first is kidney function and not what PMRPro means. The second is for cortisol level, which is. An early morning cortisol test to see if you are making a decent amount over night would be useful as well as a renal function test.

The symptoms as a collection aren’t quite screaming adrenal insufficiency though some can be in themselves. It is good the GP is looking at it.

[Barcelona1962 in reply to SnazzyD]

Thank you and all noted re the renal v adrenal distinctiin and will make sure I get the matter tested asap in the way you suggest. Again a big thank you from me.

[DorsetLady PMRGCAuk volunteer]

As others have suggested, not normal, normal, but certainly adrenal-ish… so have a look at this - would say they have been under stress -

healthunlocked.com/pmrgcauk...

[Barcelona1962 in reply to DorsetLady]

Thank you!!!!