I’ve passed the test!

[York54]

Had a call from the nurse in endocrinology yesterday afternoon. I had a short synacthen test on Monday. She said that I had passed the test and my blood result was 477 , whatever that means. She told me anything over 450 is good and that I can now reduce prednisolone by 1 mg a week . I did put her right and said I will reduce by 1/2 a mg and very slowly at that. So there we are, 5 years of trying to reduce and thought my old adrenals had given up. I know from reading on here that I still have a marathon to run yet. So chuffed yesterday I spent time sitting in my garden and reflecting in my happy place 😁🌺.

[MrsNails]

Well Done - and telling her so, slowly, slowly now - final hurdle and all that! Enjoy your garden 🌺

[PMRpro Ambassador]

That is great - so much for doommongers claiming adrenal function doesn't return - but although it proves your adrenal glands CAN produce cortisol, it doesn't mean they are doing so reliably for day to day upsets so do keep an eye out for wobbles if you are stressed.

[York54 in reply to PMRpro]

Yes, still a long journey ahead. I hope I have learned how to pace myself now. 3 days away last weekend staying with family in Norfolk, did for me. Had a couple of days doing very little afterwards .

[SheffieldJane]

That is such brilliant news! Well done for taking charge. Your happy place is very beautiful.

[Longtimer]

So pleased for you....and envious what mg are you on?....I am feeling very ill..(my reading was 92)...I am losing weight at a pound a week!...no appetite, dizzy, balance bad.....at 7 mg....

Had call from Rheumies Secretary ye sterday, he's "contacting"me in 10 days and asked if I can do a video call??..rather than a phone call, she then asked if I had Google Chrome....no, but could I download it!....just don't feel up to it, although would like to be able to.....I just want to know how to feel just that little bit better.......sorry to moan on...

Hope you keep well, it's lovely news...👍

[York54 in reply to Longtimer]

Aw Longtimer, I can empathise with you. Are they not doing face to face consultations now? The last thing you need is to be asked to do techy stuff when you least feel like it. Have you tried increasing your pred? Your symptoms sound like adrenal insufficiency.I am on 3 mg at the moment, still get tired and headaches if I do too much. In May I felt very rough when I was moved onto hydrocortisone, but thinking back it coincided with mt second jab. Sending you good wishes and hope you can speak to your rheumy sooner rather than later x

[Longtimer in reply to York54]

Thank you, haven't increased my pre d because PET scan showed PM R gone, I may be wrong, but think if I increase I have to face all this again when I drop.......all I want to know really is....do I very slowly drop to try and awaken the adrenals, or will it make me worse!

I am lucky like you....have a garden almost the same...it's my saviour...I feel safe waking round it and in my summerhouse....👍

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

Think you’re quite entitled to moan- hopefully you’ll get something sensible from Appt, are you under care of Endo? - if not, might be worth asking

[Longtimer in reply to DorsetLady]

Thank you for replying, I hate it that I keep churning out the same old story!....The last time I spoke to my Rheumi e he was going to ask for me to have an ACTH test, but said with such a low reading the Endo had said no point...already knew it was adrenal suppresion. I will certainly ask if I should see one, but I have a feeling that he thought I am at too higher a dose at 7mg so they won't see the point...he also mentioned that they don't seem to prescribe Hydrocortisone so much now....in flated price!.....which has been exposed.

I feel so ill, I am prepared to pay private to see an Endo, but wonder if I will just be emptying my pocket!....and reading the many posts on adrenal queries....the response is usually, lower very slowly....

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

Yes it is slowly,slowly, but if you’re feeling so rubbish you just want answers!

[Longtimer in reply to DorsetLady]

That is exactly what I want....

.Have never in my life had no appetite!....now weigh what I did when I got married 44 years ago!!......although when I look up adrenal suppression, weight loss and no appetite, top of the list..

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

Yes it is, but think it needs a thorough investigation- as PMRpro says, unexplained weight loss is usually considered a red flag condition by most doctors.

[Longtimer in reply to DorsetLady]

I haven't been too concerned because the Rheumi e had said a PET scan shows up anything that shouldn't be there....I had told him my mother died at 68 with bowel cancer, my father at 51 with stomach cancer....but he put my mind at rest with saying that....just hope he's right!...

[PMRpro Ambassador in reply to Longtimer]

I've assumed they would have found anything nasty in mine!!! But the weight loss is a red flag on the adrenal front too

[Longtimer in reply to PMRpro]

Oh I see, ok he will definitely be told..I have a list, he will be wishing I wasn't his first patient at 8. 30 on a Monday morning....video or phone!....

[PMRpro Ambassador in reply to Longtimer]

If anything an endo might suggest MORE pred - 5mg is the starting dose when used instead of HC but some people need more ...

[Longtimer in reply to PMRpro]

Sorry I am befuddled today, so you mean that on 7 mg they might prescribe HC?.....or I might have to up my pred....

Can a GP not just prescribe HC without going through an Endo, if told to by Rheumie?

[PMRpro Ambassador in reply to Longtimer]

Just wondered if you might feel better on a tad more - or possibly even splitting the dose too. The normal pattern of secretion of cortisol is a dump an hour or so after you wake and then another in the late afternoon which is why HC is usually prescribed as 2x daily. With uncoated pred you can time it fairly well too. But with that weight loss - think it really needs some endo input ...

[Longtimer in reply to PMRpro]

Yes, I have thought of splitting the dose, by lunchtime I can hardly walk, and it's not pain!...I am so loathe to up the dose, I just can't face going through this again when I lower..if it started to ease just a bit now and then it would be worth suffering, but no respite, day after day.....I will write these suggestions on my list when I see (on video call!) or talk to Max.....

Thank you.....

[Hidden in reply to Longtimer]

Sending you feel better wishes

[Longtimer in reply to Hidden]

Thank you...appreciated!....

[jinasc]

PMR pro has said it all.

I would just add

1) don't throw you steroid warning card away until you are off pred for at least 1 year.

2) and don't go mad - just sit and relax in that beautiful garden.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

I’ve still got mine - don’t carry in purse any more, but did for a couple of years!

[Hidden in reply to DorsetLady]

When I was diagnosed with stills in70’s I was told to carry my steroid card for 5 years after cessation.

[Constance13]

So sorry you are going through it LT (and you being so young too)! How long have you been so bad? "Life gets tedious dunnit"?

I have difficulties with weight too but I make myself eat something at least three times a day - and add the odd banana or a couple of pieces of chocolate to keep my weight up, dizziness and balance are dangerous.

[Longtimer in reply to Constance13]

Thank you,....love the "so young too!"...have been like this since staying at 7mg after PET scan....told no inflammation so saw no point in upping pred. Have ready many posts on adrenals, but never expected to feel this ill.....I try to eat....but full up very quickly....OH tells people he's getting 3/4 me 1/4 of meals....Hate the dizziness and balance, I grab the doorways when walking through....feel like a drunk....and I do not drink alchohol.of

Hoping to be taken to the broads in a couple of weeks, son and DIL picking us up for a big birthday coming up........taking chairs with us...normally have family restaurant meal...but couldn't cope with that....and with covid...well......Will let you know where we go....if you can remember it...

[Constance13 in reply to Longtimer]

2/3 for OH, 1 third for me!😂😂

Throw a pebble into whichever part of the Broads you visit - a "forever" pebble from Constance.😂😂👵🏻

Get well soon. 💐🍀

[Constance13]

Lovely, peaceful, garden York54. If that doesn't cheat you up nothing will. Enjoy!💐💐

[Hidden]

Good for you, beautiful garden 😀

[diana1998]

And what a beautiful oasis to relax in!