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!!
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...
Thank you, as always..
Not being negative -just realistic - and good luck..
I know, it's a good sign but I am apprehensive, after all these year on Pred..
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.
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..
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.. 😊
Thanks DL will plod on just now, as I've no problems, going out with walking group today nice day for it.
Enjoy..
I am 9 years down the line and a recent 9am cortisol was OK, so there's hope yet, as you say!
Ditto. Did you get the actual number? Mine was 545 and I'm on 1.5mg.
Good luck, I am sure you will get there.
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!
I'm still experiencing some stiffness in my shoulders, how about you?
In that case, then definitely slowly does it…
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
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!
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.
That is very cheering!!
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
Tgat is very encouraging. I am in my 10th year and just starting another taper from 10 mg. Very best wishes for continued recovery.
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..
That's wonderful news. Well done to you 🙏. Continued good success
is this an expensive test on the NHS. I would like to ask for one again. Last request was turned down
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?
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. 😊
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?
The place to start is with a basal cortisol - cortisol level on a blood sample taken in the morning. Can be added to any regular bloods. That can show whether your adrenal function is approximating normal or not even wriggling - both mean it is a bit pointless doing the synacthen test. Inbetween you get an idea of whether they are working and then a synacthen tests provides more in depth information.
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.
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. 
There is a light at the end of the tunnel. Well done. Reading all the stories gives hope for long timers such as me
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..
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?
Tests are explained in this link -if you scroll down NUDGING YOUR ADRENALS BACK INTO LIFE -
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.
I’m in the US, but I’m sure the test is the same, you just give a blood sample.
So happy for you!!!You finally got great news.I ve been on Prednisone for 6 years so you give me hope.
GOOD NEWS FOR ONCE
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