Who knows?: Who knows and how can you tell, without... - PMRGCAuk


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Who knows?

daworm profile image
16 Replies

Who knows and how can you tell, without goi g to an endocrinologist, if your adrenals are working again..I know it can take up to a year after your at a low enough dose of pred...and sometimes they won’t start up again....found this interesting..

“Adrenal responsiveness.

The longer high dose steroids were given for a disease like asthma, rheumatoid arthritis, polymyalgia rheumatica or inflammatory bowel disease, the more likely that individual will suffer from adrenal insufficiency symptoms on withdrawal of the steroids.

In addition, tapering off the steroids may cause a relapse of the disease that had been treated, causing a combination of disease symptoms overlapping with adrenal insufficiency symptoms. That is why it is very common for steroid tapers to be aborted, with a temporary return to therapeutic doses of glucocorticoids, followed by a slow attempt at tapering if the primary disease is in remission.

One patient mentioned a possible complication in coming off steroids is "Steroid Withdrawal Syndrome" or "rebound effect", which is the body's exaggerated response to removal of the drug. Rebound effect can result in fever, muscle pain and joint pain - making it hard for a patient and his physician to differentiate between withdrawal symptoms and a flare of the disease itself.

The side effects of cortisone, prednisone, and similar drugs are legendary. They include diabetes, osteoporosis, edema of the face, mood swings, stomach ulcers and, very importantly, adrenal suppression. In other words, your own adrenal glands shut off their production of these valuable hormones. Why not, since they essentially have been “told” by the prednisone that the adrenals are no longer needed. This bargain, then, becomes a nightmare as the effectiveness of the drugs wears off, side effects become more serious and the patient is unable to stop taking the medication.

16 Replies
SheffieldJane profile image

Have you had the Synacthen Test? This shows if your glands are working at all or in my case sluggishly. I think it’s a case of wait and see, once you know. Mainstream hospitals do the relatively straightforward test. I am seeing my GP next week. I’ll let you know. I don’t want to see an Endo or my stand-in Rheumie, they don’t have anything to pull out of the hat, except messing up my taper, at this stage.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

Not IF they are working, whether they are capable of working and producing cortisol when kicked. The entire feedback process is very complex and involves various organis and hormones - and THAT has to settle down as well before cortisol is produced reliably.

daworm profile image
daworm in reply to PMRpro

My problem now that I’m at 7 1/2....coffee...I love it and when the adrenals are in the state of recovery.....not good...tough to cut back but I gotta for awhile...I’ve read many articles now to learn what’s going on...most say caffeine should be eliminated during an attempt by adrenals to rev up again...how am I gonna rev up? No coffee, Red Bull, nuthin fun...tulsi tea I guess...herbal stuff....ugh

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer


How did I know my Adrenals were working again.

Well after a year of random bouts of fatigue apparently for no good reason stopped, I guessed they were okay. This occurred during the reduction from 6mg down to 3mg, using my slow taper and only 0.5mg drop per time. Been steroid free for almost 2&halfyears now - no problems.

As for points in article -

a. I started at 80mg (April 2012)and it took me 4&half years to get to zero,

b. No relapse during that timeframe, maybe I was just lucky but I think it was due to slow tapering

c. I had no problem once I came off the Pred, other than a general feeling of everything taking a little time to “settle” - certainly nothing like described

d. side effects can be difficult (but no worse than any other powerful drug) and not everybody gets all or even a few apart from the hamster cheeks which seem to be universal! But they all reduce as the Pred dose reduces. I had slightly raised eye pressures (no intervention required), and Pred induced cataract (successfully operated October 2014).

Pred gets a very bad press, unfairly so I think. Yes it’s a powerful drug, but it does what it says on the Tin! It’s given many people a reasonable life during the course of their illnesses, and in my case saved the sight in one eye (unfortunately left already lost due to mis-diagnosis).

If the doctors allow you to take it in a sensible manner, and also acknowledged how long PMR and GCA actually last then the majority of patients would get through relatively unscathed.

Of course there will always be some patients who do not get through totally unaffected, but articles like this don’t really give a balanced view!

coda123 profile image
coda123 in reply to DorsetLady

thank you Dorset Lady, you are always so sensible and reassuring

Dream21 profile image

I had a simple Adrenal test, too. It was negative, but relieved my mind. I was struggling severely, but knew it would pass. It finally did. :)

bunnymom profile image

My rhuemy said also everyone recovers adrenal function... Just go slowly.

PMRpro profile image
PMRproAmbassador in reply to bunnymom

He IS wrong!!!! As Karools will tell you. I know about 3 people in the forums whose adrenal function is shot - quite a high proportion really. Our local hobby-GCA specialist had said the same but was very surprised when I told him how many I knew.

daworm profile image
daworm in reply to PMRpro

Right!! Some never can recover..some of these doctors are amazing in how little they really know...they got their degree and job and they just quit learning anything new...not all though, some are great..

karools16 profile image
karools16 in reply to bunnymom

In May 2017, when I was on 2mg Pred, feeling well, with NO FATIGUE, I was referred for a Synacthen test. Result came by POST, on a SAT morning. ADDISON'S DISEASE! I fell apart. After 13 years GCA, I thought I would soon=ish be off Pred and OK. I was taken off Pred, put onto Hydrocortisone, which had horrendous side-effects. I refused to continue, and asked to be put back on Pred. I have to be on Pred, permanently. I cannot go below 5mg. Am I bothered? Nope. Life has gone on. The add=ons are the problem, but you just pick yourself up, dust yourself off, and start all over again. I am currently on 7mg, with an occasional top-up of extra 5mg, for a stress-related situation, at present.

piglette profile image
piglette in reply to karools16

Why did you get a Synacthen test if you had no fatigue and felt fine?

karools16 profile image
karools16 in reply to piglette

My Neuro said he wanted to know if my adrenals would be able to produce cortisol when I came off Pred, so this was the reason for the test.

piglette profile image
piglette in reply to karools16

Fair enough. It is just surprising you had no symptoms of adrenal deficiency at 2mg.

karools16 profile image
karools16 in reply to piglette

Exactly. That's why I went to pieces. That I could be so ill and not know it! They only test at a lower dose, unfortunately. I would rather have known sooner.

piglette profile image
piglette in reply to karools16

I would have gone to pieces too. It really does seem strange.

Hellyowl profile image

My Rhumy said my adrenals are not working, the endocrinologist said the GCA was still present and both sent me away to spend 6 months at 5mg (4 months in) and said I can have adrenals tested when I am down to 4mg. So far I have had 2 flares at 4.5mg so this year is going to be 3rd time lucky. This time I am going to reduce at 1/4mg and they will just have to wait for me. Personally I think it is both, adrenals not working and GCA still present. Both are right lol.

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