Good News for a change: As I have tapered down to... - PMRGCAuk

PMRGCAuk

22,020 members41,756 posts

Good News for a change

Southmead profile image
44 Replies

As I have tapered down to 3mg a day. I went for a 7am blood sample to take a test for my adrenal glands. The good new, the results showed my adrenal glands were working again!

After over 10 years could the end be in sight? I suppose I should continue on with the slow taper, and who knows, this might be it?

There is hope for us all yet.

Good luck everyone!!

Written by
Southmead profile image
Southmead
To view profiles and participate in discussions please or .
44 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Yes you should continue with slow taper... but just be aware that despite your test results it can take up to 12 months once off Pred completely for adrenals to be back to 100% function.

healthunlocked.com/pmrgcauk...

Southmead profile image
Southmead in reply toDorsetLady

Thank you, as always..

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSouthmead

Not being negative -just realistic - and good luck..

Southmead profile image
Southmead in reply toDorsetLady

I know, it's a good sign but I am apprehensive, after all these year on Pred..

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSouthmead

Very understandable…all you can do is reduce very slowly and see what happens… and if you need to be on a very small dose for a long time, so be it. But don’t rush, or be rushed off Pred. All the best.

Harrywogan profile image
Harrywogan in reply toDorsetLady

Morning DS ,IAM down at 1 1/4 but haven't bothered with adrenal test, feel good, do I have to think about getting it checked or just leave it.Nice day here in Scotland for a change..

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toHarrywogan

Hi

I never bothered to get mine checked . I might have, if I felt it was a real problem , but as I’ve said before the fatigue was a bit spasmodic but no other issues - so I knew they were trying…

Up to you whether you ask for test - I wouldn’t want to say yea or nay…

Bit overcast in Dorset this morning - but time to improve.. 😊

Harrywogan profile image
Harrywogan in reply toDorsetLady

Thanks DL will plod on just now, as I've no problems, going out with walking group today nice day for it.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toHarrywogan

Enjoy..

Rugger profile image
Rugger

I am 9 years down the line and a recent 9am cortisol was OK, so there's hope yet, as you say!

Southmead profile image
Southmead in reply toRugger

Good luck!

diana1998 profile image
diana1998 in reply toRugger

Ditto. Did you get the actual number? Mine was 545 and I'm on 1.5mg.

Rottsuzi profile image
Rottsuzi in reply todiana1998

Mine is 370 and I’m on 4mg of preds and she’s told me to drop

Rugger profile image
Rugger in reply todiana1998

Mine was 344 and I'm on 3mg - staying there for a while.

Southmead profile image
Southmead in reply todiana1998

The range was 8.0 to 25.0 I was 8.2.

piglette profile image
piglette

Good luck, I am sure you will get there.

fmkkm profile image
fmkkm

I’m right there with you. 9 years and 2.5 mg. Just had cortisol and acth done and they look normal. My new, young, endocrinologist left me a note on my electronic chart:

“Cortisol and ACTH looking really good here. Levels suggest you no longer have adrenal insufficiency. From this standpoint, okay to stop steroids.”

So glad I have been educated by Healthunlocked!

Southmead profile image
Southmead in reply tofmkkm

Fantastic!!

Southmead profile image
Southmead in reply tofmkkm

I'm still experiencing some stiffness in my shoulders, how about you?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSouthmead

In that case, then definitely slowly does it…

moonflower2 profile image
moonflower2 in reply tofmkkm

Same thing happened to me a couple of years ago. I was taking 1.5mg of prednisone and I stopped as I was told to by the endocrinologist. Several months later I had lost my appetite. Lost 17 pounds in two weeks. Drs. didn't know what was wrong with me. I finally figured out that it might have had something to do with getting off of steroids too fast and put myself back on them after feeling so bad.( Nausea. vomiting and diarrhea occurred several times also.) I am again off of prednisone, have gained back the lost weight but I have no energy and have a lot of arthritis aches and pains. Am hoping that by May when a full year off of steroids has gone by I might feel better as far as the energy is concerned. Might still end up going back on low dose of steroids if I don't feel better than I do now..I d

HeronNS profile image
HeronNS

Good adrenal function is great but it isn't the same as PMR being in remission. I had good results with a morning cortisol test, I think in 2022, at about 2 mg dosage. I didn't get off for a couple more years, and had already had an unsuccessful fling with zero back in 2020

Even as my second attempt to achieve zero was going well I still took a really long time to taper down from about 2 mg. Unlike the first time when I followed a slow but strict taper plan this time I just listened to my body. If there was any sign or suspicion of ache or pain I didn't try to guess whether it was PMR, osteoarthritis, overdoing things, but simply didn't take the next taper step until that pain was gone. In the end I never took an expected dose because I simply forgot! No problems, so the last dose was the one before the one I forgot. At that point my new dose was zero and I was taking half a mg at increasing intervals. Couldn't get more close to following a "dead slow nearly stop" regimen than that!

Southmead profile image
Southmead in reply toHeronNS

Thanks, I know it’s not the end, but at least a sign my adrenals are doing something. I’ll take that for now.

Zebedee44 profile image
Zebedee44

I wish you well but after eight years and at 3mg I am well aware of lingering PMR despite good synacthen test result. I haven’t been able to get any lower with the pred.

It’s quite wrong to say that you no longer have adrenal insufficiency. Your adrenal glands are shown to work with a hefty dose of ACTH but that doesn’t mean they are working reliably.

Southmead profile image
Southmead in reply toZebedee44

Thank you, yea I am aware that everything is not miraculously alright, but it’s the first positive sign in over 10 years, and of course being on a very low dose is less damage to the body.

Ridge profile image
Ridge

That is very cheering!!

Harrywogan profile image
Harrywogan

Hi there in the USA, IAM at 1 1/2 and feel fine ,how do you know if there working IAM 7years in just hope there walking up x

Nightingales profile image
Nightingales

Tgat is very encouraging. I am in my 10th year and just starting another taper from 10 mg. Very best wishes for continued recovery.

Southmead profile image
Southmead in reply toNightingales

Like you many flares and tapers, up to now there was no change in the adrenals. This is the first time that has happened. Encouraging if nothing else..

lkcreedon profile image
lkcreedon

That's wonderful news. Well done to you 🙏. Continued good success

Southmead profile image
Southmead in reply tolkcreedon

Thank you, a good sign if nothing else..

Suffererc profile image
Suffererc

is this an expensive test on the NHS. I would like to ask for one again. Last request was turned down

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSuffererc

No not expensive -but you need to be on a low enough dose of Pred for it to be meaningful.. what dose were you on when you requested previous one?

Suffererc profile image
Suffererc in reply toDorsetLady

Thanks for replying. About 3mg. I have just finished taking .5, a knee doctor request b4 op. I am wondering if my adrenals are actually working and don’t want to leave to long b4 pain builds up again so have to take a big dose. Was planning on staying on .5 for the rest of the month. 😊

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSuffererc

How do you feel in yourself... any obvious adrenal insufficiency symptoms?

You can ask again...did GP give a reason why they wouldn't action last time? The initial cortisol test is just a simple blood test in surgery - with a follow up if necessary..

No harm in asking again, and if they say no - ask why?

Rugger profile image
Rugger in reply toSuffererc

I doubt a 9am cortisol test is very expensive - and is done as a routine blood test at the GP surgery. A Synacthen test is done in hospital usually on a Day Unit, for a morning, which will be more costly.

Maybe you were turned down for the more expensive Synacthen test, or maybe you were on too high a dose of pred at that time for the test to be considered appropriate.

Pippah45 profile image
Pippah45

I don't want to put a damper on you but I was doing really well for several months on 2 after a long slow taper - then I had a flair just as I was thinking of the next drop. Recovering from that but it does seem we never know what is round the corner. :(

Southmead profile image
Southmead in reply toPippah45

I’ll take the small glimmers of hope. The funny thing is I feel pretty good in the mornings, until I take the 3mg of Pred. I don’t know what that means..

Estellemac profile image
Estellemac

There is a light at the end of the tunnel. Well done. Reading all the stories gives hope for long timers such as me

Southmead profile image
Southmead in reply toEstellemac

A long way to go yet I fear, but the first real positive sign in over 10 years of test, so something must be happening..

Yorksman profile image
Yorksman

Good news, pleased for you.

How is an adrenal gland test done? Is it a blood test? Also what do the results show and how do you know if the glands are working?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toYorksman

Tests are explained in this link -if you scroll down NUDGING YOUR ADRENALS BACK INTO LIFE -

healthunlocked.com/pmrgcauk...

Rugger profile image
Rugger in reply toYorksman

You can have blood taken at the GP surgery for a cortisol level, around 9am before taking prednisolone, which gives an indication of your adrenal function. Depending on the result, it shows if your adrenals are failing or are unlikely to, or wait & see! This is explained further in the link that DL has given.

Southmead profile image
Southmead in reply toYorksman

I’m in the US, but I’m sure the test is the same, you just give a blood sample.

Not what you're looking for?

You may also like...

good news and bad all in 1 week

The good news my Rhumy told me my GCA is in remission, My Endo told me my adrenal glands were shot...
pog165g profile image

Good news/bad news

My newest grandson arrived on Thursday, 8lb 1oz of loveliness (good news). I start with my periodic...
Trish21 profile image

PMR- a plain English description

PMR is an autoimmune disorder that causes your immune system to not be able to recognise your body...
ignatz profile image

It's a real bugger!

After two years I'm down to 3mg p d and now I'm truly struggling! Rheumy says my adrenal glands...

Stomach virus.. Should I increase pred for a few days?

I've had a nasty stomach virus for a few days. PMR symptoms under control. Should I increase pred...
bunnymom profile image

Moderation team

SophieMB profile image
SophieMBPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.