Hello!
I have also developed steroid induced adrenal insufficiency from taking steroids for UC, and I now have a pouch. I would like to tapper down when my pouch is stable.
There is a support group on facebook for people with steroid induced adrenal insufficiency, who have developed this due to steroid use for various kinds of conditions (further to UC). You can see many useful posts there.
AIT&R - Adrenal Insufficiency Tapering and Recovery | Facebook
Some key points from my personal experience as well as from my reading of other people s stories:
1. Slow tapper is what most people try. As in 1.25mg hydrocortisone per month lets say. It can still be symptomatic. With symptoms, one guidance as to when to try to push through them and when you might need to updose, is to check your blood pressure and glucose. If significantly lower than usual (you need to have some measurements from before starting the tapper to know what your usual is), then this can mean that you need tp updose to avoid adrenal crisis.
2. Alternate day tapper can be helpful. so if you start at 20mg, then 1st week alternate between 20 mg and 18.75mg, then 2nd week alternate by 2 days i.e. 18.75mg, 18.75mg, 20mg,20mg, 18.75mg, 18.75mg, 20mg. And so on.
3. There might be supplements that put stress on adrenals so best to avoid these. There is very little evidence on this, some people go by experience. Caffeine for example is said to stimulate adrenals for cortisol production, if your adrenals are not working well then this puts pressure on them like physical or mental stress.
4. Usually below 15mg is when our body will start producing cortisol. You will need to monitor this with synacthen test and morning cortisol test.
5. During the taper and after you hit 0mg, you will still need to updose under circumstances of stress (physical, mental, emotional, illness) , this will depend on each person s tolerance of stress. Our stamina will continue to increase slowly slowly after hitting 0mg.
6. Unfortunately I have seen people who say they have tapered to 0, and after some time either due to a trigger or without them realising what the trigger was, their adrenals again go back to shutting down.
All of these will need to be discussed with your Endo. I have never seen an Endo from mine and other people s experience that is really experienced with people with AI or people with steroid induced AI who try to taper. (aside from Dr Eilerman I mention below) So the best we can do is find an Endo who is willing to try and help us and research and learn.
If your synacthen test is good, i.e. when you receive ACTCH your adrenal glands produce cortisol, so you dont have both secondary and primary adrenal insufficiency (after chronic steroid use a person can first develop secondary AI and then if the steroid use is very much prolonged they can develop primary AI). Then there is an Endocrinologist in the US, Dr Bradley Eilerman in Kentucky, who has tried in some of his patients, tapering hydrocortisone kind of quickly while introducing ACTH, and then tapering ACTH. Dont know much about this and what the benefits are. This is mentioned by a member in the facebook group I mention above.
There is a paper on the use of selenium for steroid induced adrenal recovery. There is more research talking about selenium and possible benefits on HPA that have not yet been well tested though. I take it. Havent tested yet if it has benefited.
Does selenium long-term therapy restore hypothalamic-pituitary-adrenal axis in oral steroids dependant patients? (ers-education.org)
Hope these help. It is a difficult situation. There are some success stories who continue well after hitting 0mg.
