Adrenal problems

[moonflower2]

I have reduced prednisone too quickly twice on the advice of my doctors and ended up with bouts of severe vomiting and diarrhea. I finally stopped taking prednisone after five years six months ago and thought that this time I had slowed the process down but I still don't seem to have got it right!

I have had three episodes of sudden, one episode diarrhea and yesterday something new: I started diarrhea in the evening and it continued all night long. I finally fell asleep around four in the morning. You have stated that it could take as long as a year or more for the adrenals to function properly and I would like to hear from someone who has had the same kind of problems that I am having to hear whether they finally reach a better place as I am beginning to think perhaps staying on prednisone for life might be the better plan.

[Gaz227]

I hope you are successful , it is a real challenge to free yourself of pred, I know 2 or 3 people that have managed it and are now completely meds free . I’m not so lucky my adrenals have just about packed up all together and will be in pred and other drugs for life . But my quality of life is good and there are a lot worse of than me . Got my fingers crossed for you 👍

[SnazzyD]

Hello, could you put some detail into your bio about what your journey has been like and dosing? There is no info about the timescale you reduced to zero. How long ago did you stop the Pred this time around and was the last attempt exactly the same?

The main thing is trying to find out if this is definitely poor adrenal function. Do you have any other symptoms of low cortisol? I would be more inclined to think it was this if the D&V came after a period of high stress or unusual activity, though it isn’t clear how you manage on a normal day.

If it is adrenal insufficiency and it is this bad, you need to see a doctor and at least have a test. There is a possibility that you have a gut issue unconnected with low cortisol so it needs investigation such as a gut condition that is relieved by Pred and its removal allows inflammation to build. Again, a doctor’s opinion needs to be sought.

So, fill in the gaps and we can help more effectively. Also, which country are you in? That can make a big difference to advice.

[PMRpro Ambassador]

If you have been relatively fine for the last 6 months it certainly suggests that your adrenal function is slowly returning to normal daily duties - but as Snazzy suggests, possibly unable to respond adequately to stress? Six months of no pred at all will have provided the right environment for your adrenal function to recover. Do you have any other symptoms of adrenal insufficiency?

I would think asking your GP/PCP (are you in the USA since you mention prednisone and use US spelling?) to do a basal cortisol level would be a good start. That is a cortisol level done on a blood sample taken between 9am and 1pm. Normal values for a blood sample taken in the morning are 5 to 25 mcg/dL or 140 to 690 nmol/L. Normal values depend on the time of day and the clinical context. Normal ranges may vary slightly among different laboratories. If the level is under 100 nmol/L then that is almost certainly adrenal insufficiency and above 400 is taken as normal adrenal function. Results in between may require a synacthen test for more clarity but that is a bit more complicated to request and the basal cortisol provides the main info.

At the same time, any change in bowel habit should be looked at - just to rule out other nasties.

[posthinking01]

Hi there so sorry you are having to experience this rather frightening scenario. I'm afraid I have been experiencing medical 'professionals' trying to get steroid patients off their medication - I have heard 'give your adrenals a good shake up' etc. etc. - unbelievable particularly when I am virtually Addisonian although via a different route - Addison's is total destruction of the adrenal gland for various reasons - but my adrenal insufficiency is via the pituitary gland - I was actually at the hospital where Addison's was practicing at the time he discovered the adrenal gland insufficiency and was told - you don't have Addison's you know - I answered - I daresay I don't - but if he were alive today I am sure he would not divide the diagnose and it would all have been called Addison's - in fact I have been told by another London Hospital to make sure I say Addison's if I get in trouble because people will understand that and not particularly "I have Adrenal Insufficiency type II " - which could cost me my life in a medical emergency.

Sorry I digress - now back to your problem - the symptoms you are suffering seem to be classis for adrenal insufficiency - it is not good to allow this to happen in my opinion - it is all very well for Drs etc. to ask you to get your steroid medications down without realising the implications or offering advice if things go wrong as it has for you. One other thing to be mentioned whilst steroids are always seen as a 'monster' it has to be taken into account how they help us too when the adrenals are low and possibly causing the inflammatory process we eventually suffer. Something else that needs to be taken into consideration is that if your adrenals are running low then you are only putting back what they need to keep you well- won't get the moon face etc. etc. they go on about - unless your body does not need it - all you are doing is putting back what the gland needs to work properly.

Another thing worth mentioning when I asked a Consultant you aren't going to drop me from clinic are you - he said no I can't do that because you are on steroid medication !

[PMRpro Ambassador in reply to posthinking01]

That was fascinating and useful - not a digression - and I agree with every word you have said!!! It happens all the time. And that London Hospital instruction - so right. I tell people to say Addison's SECONDARY to pred. If only all doctors realised patients on pred need to be monitored ...

[posthinking01 in reply to PMRpro]

Thanks - I am glad it has helped - I get so cross when certain medical ‘professionals’ instruct a patient to drop their steroid medication without understanding the consequences and possibly leaving the patient stranded when things go wrong - I don’t think most of them unless endocrinologists who SHOULD know - realise how dangerous their request might be and should offer full support whilst they are undertaking what they are requesting of their patients- I ended up with Sepsis twice because I didn’t increase my dose quickly enough for a UTI I was experiencing ! No-one wants to be on steroids and all of us will do their utmost to come off them if we can but the medical profession need to know how disruptive it can be whilst we try and be there for us on that journey !

[PMRpro Ambassador in reply to posthinking01]

I'd just be happy if they realised we don't CHOOSE to need them and aren't addicted in the way one becomes addicted to heroin ...

[posthinking01 in reply to PMRpro]

Exactly - lack of understanding on their part !

[Pollyanna16 in reply to posthinking01]

Thank you for that. I will follow your advice, I quite often get a blank look when I say I have “Adrenal Insufficiency”. even from medics.

[posthinking01 in reply to Pollyanna16]

Yes best to be safe !