What's next?

We discussed this on another thread, which I cannot find at present, but really everyone who has been on long term pred for whatever reason should have this test. If they have not 'woken up' then you are in trouble and you will need to be on pred for rest of your life.  I don't want to frighten anybody, but it is something we all need to know.

It can be done at 7.5mg and below. (although it can be done earlier).

The production of cortisol by the adrenal glands is the result of a very complex set of interacting factors which work on both positive and negative feedback and involves the hypothalamus, the pituitary and the adrenal glands as what is called the HPA axis. The thyroid and parathyroid glands also play a part in that the whole range of organs and hormones interact with each other in some way.

Pred therapy can cause failure of the adrenal glands altogether but usually if you reduce the dose of artificial pred slowly enough they will start to function again in the majority of people although it may take a year or more. As long as you are taking pred they are not required to do a lot - just as your central heating boiler doesn't do a lot in the summer because it is warm enough. The presence of corticosteroid substances in the blood leads the body to think it's well supplied - and in some ways it is, pred does the job too, the body isn't that fussy whether it is natural or synthetic steroids that are there. But if you were to stop taking that pred suddenly the body wouldn't suddenly be able to produce natural cortisol because of the state of hibernation they are in.

There are various causes of adrenal failure and it is described as primary or secondary.  Secondary includes steroid therapy or illnesses affecting other glands such as the pituitary which then fails to stimulate the adrenals to do their job. Secondary adrenal failure is less serious than primary failure as all that is missing usually is the cortisol and that can easily be replaced with artificial corticosteroids such as pred.

Primary is the total lack of function of the adrenal glands due to their destruction or inability to function at all. This may be due to genetic causes where the genetic code is incorrect, or illness or infection such as TB or surgical removal/damage for various reasons. However, the most common cause of primary adrenal failure is autoimmune disease which attacks the glands and damages them so badly they don't work.

Autoimmune disease is a strange thing. Sometimes it is very specific - Type 1 diabetes only attacks the pancreas so it is unable to produce insulin. In other cases there may be a lot of different tissues that are attacked by the immune system - cells in the joints, the gut, the muscles, the nerves or the blood vessels - and in turn this can affect various organs such as the lungs, the kidneys and so on.  In the past links were made between specific signs and symptoms and someone gave them a name - but sometimes people have the signs of one disease and some of the symptoms of another which causes some confusion as a mongrel disease is created - like a dog that has lots of features of one breed but the ears of another and a tail that doesn't look anything else's. 

So for some people who have PMR and need to be on pred it is possible that the underlying autoimmune cause may also be attacking the adrenal glands - but no-one really knows there is a problem until they have problems getting off the pred. Or the adrenal glands may not have been functioning terribly well anyway - they do degenerate with age, like many other things. But it isn't a certainty. 

I doubt there are any accurate figures about how many people with PMR don't manage to get off pred altogether for whatever reason - but figures do suggest that about a quarter will be on pred for a long time and some of them will need it for life. Whether they will eventually get off pred depends on a lot of factors and it may be the PMR is taking a long time to go into remission or the adrenals are just sluggish about waking up - or it might be a lack of adrenal or pituitary function that is to blame. To identify which it might be would be a research project in itself and require a lot of complex testing - and in most cases all you would end up with is the decision this patient needs a low dose of pred. But if you do a simple synacthen test you will know whether a given patient is going to be able to produce enough cortisol to function and remain well. 

If there are other problems later you can cross tha bridge when you get to it.

Does this make sense? It is complicated if you don't have the background biological knowledge and I could write 2 or 3 pages about it - but you wouldn't want to read that!

http://www.endocrinology.org/policy/docs/11-03_adrenal%20insufficiency.pdf

http://www.nadf.us/adrenal-diseases/secondary-adrenal-insufficiency/

What a wonderful synopsis.

Hope you are doing well and enjoying your cooler weather.y sister said it was almost cool enough to keep the windows open.

I was wondering if you saw the post from Audrey about the US email group? She is in Florida to. I think the post was earlier in this one but if you can't find it and are interested send me a PM and I'll give you her email.

Hugs, Diana