still confused!

[AnniesRyder5]

I was diagnosed in 2020 and am currently tapering , now on 4 mg

My synacthan test was 432. I’ve been ok ! Except for this overwhelming tiredness, feeling unwell most of the time and joint pain, which could be arthritis but I don’t know.

My latest rheumatologist letter stated that at 3mg (which should be next week) I should request another synacthan test.

However I can’t decide whether I should stay on 4mg a while longer.

The letter also states that if I’m struggling she could organise an endocrinologist appointment.

So on the one hand I’m told I should expect to struggle while tapering and on the other she invites me to ask for help.

I can’t decide what to do. I hate the idea that a synacthan test on its own will give a relatively good result but in reality I’m struggling!

Any advice would be very welcome.

Thank you

x

[PMRpro Ambassador]

Unfortunately there is nothing that can change the reality: you have to get through the horrible bit and out the other side.

What you KNOW already is that your adrenal glands CAN produce cortisol, that bit of the circuit is functioning. But there are a whole load of other steps that also have to sort themselves out and get themselves up to speed and learn the harmony to sing in the choir. It's like your car - just a full tank or charged battery is needed, but also unblocked fuel lines that haven't got a hole and are correctly attached.

[AnniesRyder5 in reply to PMRpro]

Thanks again for helping me keep perspective

[DorsetLady PMRGCAuk volunteer]

Adrenals can take a long time to get back to fully functioning - and as PMRpro says it's usually just a matter of time ... and very often not feeling well..

Mine took about 8-9 months on low doses to spark enough, fortunately only seemed to suffer random bouts of fatigue... but for many it's much longer whilst you're still on Pred - and then another 6-12 months after coming off Pred to be completely back to 100%.

Plus as you say OA may be causing to additional aches...

... and staying at 4mg a bit longer may well help... gives adrenals a chance to catch up a bit.

But there is no quick option.

[Longtimer in reply to DorsetLady]

Think the most frustrating thing is there is nothing we can do to help the situation. Feel quite ill/ weak today so off to bed soon, and so it goes on……hope I have the energy to get upstairs!

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

No there isn't..... 😔...just time and patience, and as you are doing- rest...

[Zebedee44 in reply to Longtimer]

I feel for you, being in the same boat. I am losing whole days of my life to this fatigue, and still at 5mg. I can’t even contemplate trying to taper, would almost rather INCREASE my pred to get my energy back. It’s depressing to think there is no way through this, but it’s a small comfort to hear I am not alone. Wishing you all the best, Chrissie

[DorsetLady PMRGCAuk volunteer in reply to Zebedee44]

There is a way through it - but unfortunately it’s not quick nor necessarily easy…. 🌸

[Longtimer in reply to Zebedee44]

Couldn’t agree more feel far more ill with this adrenal problem than PMR itself. Every day is the same, so depressing. Have turned down going out for a coffee etc with friends/family. Hope things ease for you soon.

[Zebedee44 in reply to Longtimer]

Thats exactly what I was thinking. Mostly no pain but just no energy, it's yuk!

[AnniesRyder5 in reply to Zebedee44]

Don’t you also find that because it is so draining that you try to put a brave face on - with cosmetics or otherwise!

[Longtimer in reply to AnniesRyder5]

No, I don't go out to put a brave face on....wish I did!...just spoke to my son who is frustrated with the fac t he can't do anything to help....if I'm honest, not driving has taken away my i ndependence, just wish after 5 months at 4.5mg I could have the odd day when things ease a bit....We live in hope....

[AnniesRyder5 in reply to Longtimer]

I totally agree. Have you had a synacthan test?

[Longtimer in reply to AnniesRyder5]

Yes, but the short one. It was last September, reading 215, about 3 weeks ago had cortisol early morning test at surgery, it was 184 or 187, so it had dropped, but don’t think they are so reliable. Have you?

[AnniesRyder5 in reply to Longtimer]

I’m obviously still learning!

I’ve had a synacthan test but I’ve no idea if it was a short one ! What’s the difference with a long one? I expect it just takes longer .

[PMRpro Ambassador in reply to AnniesRyder5]

They just take more blood samplesm commonly up to 24 hours but sometimes 48. There is no evidence it gives a better or more reliable result - so no point doing it really.

impendo.co.uk/for-doctors/d...

[Longtimer in reply to PMRpro]

Very interesting link, especially where it mentioned BMI!

[AnniesRyder5 in reply to PMRpro]

Thanks for explaining x

[AnniesRyder5 in reply to Longtimer]

Those figures do seem low 🥴

[Longtimer in reply to AnniesRyder5]

Suboptimal is the word she used in the phone call!

[PMRpro Ambassador in reply to Longtimer]

Restrained ...

[Longtimer in reply to PMRpro]

Wish I had to be restrained because of too much energy!

[AnniesRyder5 in reply to Longtimer]

What a contrived use of language!

[Longtimer in reply to AnniesRyder5]

Exactly!

[PMRpro Ambassador in reply to AnniesRyder5]

Probably what the lab classified it as in their report. As opposed to absent ...

[Zebedee44 in reply to AnniesRyder5]

Interesting you should mention that because I have been putting a bit of blusher on and some eyeliner because I look so tired. Having terrible nights with very little sleep, then lose the whole day to fatigue, then a good night and a good day. None of my people have ever understood that I have a chronic illness so they certainly can’t get their heads round this stage, nor can I really.

[Gossiplady in reply to Zebedee44]

Hi Zebedee44! Isn’t it awful this losing whole days of our lives to this fatigue? Outsiders and family do not understand. I am trying to be patient, but it is difficult. Keep smiling, we have our friends on this wonderful forum and we can rant whenever we want to.

[Zebedee44 in reply to Gossiplady]

I have been reluctant to rant about the adrenal insufficiency on the forum in order not to scare the newbies! A bit like childbirth it’s daunting if you know all the details before the event. And what I read on this post confirms my worst suspicions. My life was swimming along quite smoothly till I got down to 5mg pred, now I feel I’m back in the deep end, drowning not waving!

[PMRpro Ambassador in reply to Zebedee44]

It does improve though - I've been at 5mg for a few months and I feel a lot better than I did at first. Trying to screw up the courage to aim for 4mg ...

[AnniesRyder5 in reply to DorsetLady]

Thank you once again - I must admit I didn’t realise how long it might take !

[DorsetLady PMRGCAuk volunteer in reply to AnniesRyder5]

No I don’t l think you do -until you start asking questions of others. Not sure most doctors have any idea either -other than Endos

[PMRpro Ambassador in reply to AnniesRyder5]

It has always been said the last stage can be a month for every year of pred but in fact that is rubbish, This study

sciencedirect.com/science/a...

shows much more realistic recovery times - more like 2 years for many and none of these patients were on pred for more than about 4 years. There is, they say, no way of predicting how long recovery will take.

[piglette]

There is nothing much you can do about the deathly fatigue, in my experience, apart from giving in to it. I did think of making little wax models of my adrenals and sticking pins in them, but that might have been counter productive and I was too tired anyway!!

[AnniesRyder5 in reply to piglette]

Why not try when you’re upto it

[piglette]

I wouldn’t dream of sticking pins into you!

[Gossiplady]

Hi Pottawattamie! So pleased when I read those pins have now stopped for you. It gives me great hope. Thank you.