Adrenal glands

[Lindafrancis]

I have just been diagnosed with Adrenal suppression due to being on steroids to long for Polymia algia has anyone any experience of this

[PMRpro Ambassador]

It would be helpful if you told us how long, what doses of pred and current dose.

We do have a few people on the forum with poor adrenal function after a long time on pred - one had a "no function" result at one point but after a bit longer and at a lower dose it came back up. It can take a long time - experts say up to a year or more after stopping pred altogether.

[SnazzyD]

What’s the lowest dose you got to before they said that? Did you have any sort of test for adrenal function ?

[Lindafrancis in reply to SnazzyD]

I got down 3mg and was having numerous problems for about 18 months feeling really giddy my blood pressure was dropping I had nauesa and my balance also had some nasty falls so I asked my GP for some blood tests and the one came back saying the inflation level were slightly raised he didn't want to raise my preds I asked him was it possible they were only slightly raised because I was on preds he could not give me a answer and told me I need to go back to the consultant so I did this and he did a synacthen test and he told me he had to speak to another consultant because the results were not good I was then told I had to be on 7.5mg pred and Midodrine for life

[PMRpro Ambassador in reply to Lindafrancis]

How quickly did you reduce from 5mg? Though if it remained low after 18 months of being under 5mg it may well not return.

[PMRpro Ambassador]

You have told us on another thread that"I'm on 7.5mg pred. 5mg morning 2. 5mg early evening also 2.5mg Midodrine they told this will be for the rest of my life"

I have replied there:

If you are still on 7.5mg pred/day then no doctor can tell you that you have irreversible adrenal insufficiency - that is still a dose at which it is suppressing adrenal function simply because of the dose. The synacthen stimulation test doesn't give reliable results until your daily dose is down to under 5mg, preferably 3mg.

Who told you this? There are people on the forum who have had no adrenal response while on a dose above 5mg but it returned once they were able to reduce the pred dose further.

[SheffieldJane in reply to PMRpro]

I was one of those people Lindafrancis I got a normal reading the second time I had a Synacthen Test (3mgs). In spite of being on steroids for nearly 5 years. The Endocrinologist that I see gave me reasons to be hopeful.

[powerwalk]

I have been recently told my adrenals will probably not come back. I had a synachten test and there is nothing there!! Been on 5mg for over a year. But I think it's one of those things that can change, seems to be a very individual thing. I live in hope!

[Lindafrancis]

Thank you for your reply I have been told that my adrenal glands are damaged to the extent of never going to work again this is what my endrocrinologist has told me