Adrenals still sleeping.
Posted , 16 users are following.
Having been on Pred. since 2015 for GCA, Itapered down to 5mgs. and all was well. When I lowered to 4mgs. things faltered and I was given a cortisol test, which turned out to be low. I was referred to Endochrinology and stopped taking Pred. about 2wks. ago and switched to Hydrocortisone . Iam now awaiting a short synacthen test and see the Consultant next week. I have been to steroid training with the Nurse and everything was explained to me. I feel fine at the moment, but wondered if anyone else has any advice about how long it can take if ever for the Adrenals to wake up. Thanks.(sorry, that should have read, I am waiting for the results of the test which I had last week)
0 likes, 8 replies
Harrie4 catherine34621
Posted
This is the first time I've seen this sequence of events as well as referral to an endocrinologist. I'm at the 5 mg mark and starting the next dsns to 4.5 mg. This was the point at which things went off the rails 6 months ago (and I had to go back to 10 mg) so I'm following this thread with much interest and hope to see replies and updates. thx!
catherine34621 Harrie4
Posted
Just an update on my recent post "Adrenals still sleeping", saw Consultant in endochrinology on Thursday 29th Aug. result of Synacthen test shows Cortisol is being produced, but not enough so continue with Hydrocortisone and have test again in approx. six months. I told him that I didn't feel any difference in the Hydro. and the Pred. My Rheum. told me to go from 5mgs. to 2.5mgs then to zero in two months, but when referred to Endo. they switched from 5mgs. of Pred. to Hydro. 1=10, 1=5, 1-5, daily. I am still taking 20mgs. of Leflunomide daily as well. So far, so good.
alley2 catherine34621
Posted
My Doc tells me I will be on pred for the rest of my life currently on 7.5pred going slow trying to get to 7pred when I do I'll stay there for a bit.
EileenH alley2
Posted
He can't tell or know - but there are some doctors who tell patients that.
ptolemy alley2
Posted
What an idiotic thing to tell you, has he got a crystal ball?
nick67069 catherine34621
Posted
You are at critical levels, when your body needs to start topping of cortisol, since we usually produce 5-7mg /day. Nobody knows how long or if adrenals are going to wake up. Even short synacthen test only show if adrenals can produce cortisol, not if they actually are awake. Usually it takes a year after you stop prednisone for them to restore normal function. Some rheumatologists keep the patient at 5mg for extended period ( 6-9 months) to let the adrenals wake up. I stayed on 5mg for at least 6 months after first failed attempt to reduce below that level. Don't rush, it is not a race. Most of side effect of prednisone are gone at this level, so it is not critical to get off quickly. I would try to optimize QOL rather then reduce pred quickly.
EileenH catherine34621
Posted
It has been suggested by one study at Leeds that at least half of us will have problems regaining normal adrenal function but for most reducing the pred dose VERY slowly usually gets the right result in the end. Most problems arise as people think that the end is in sight - but that is when you have to go even slower! In over 10 years on the forums I have only met a few people whose adrenal function didn't return eventually. One lady on another forum had a synacthen test at about 6mg that was low but a few months later at 5mg it was OK - just impatient having the synacthen test. I do know a few who have been referred to an endocrinologist, some have been switched to HC - which is fine if you get high enough a dose and often enough if the PMR is still active or you will have a flare!
Harrie4 catherine34621
Posted
The comments to an excellent and well-framed query have been very helpful indeed. I'm sure these generous insights will be put to good use. I know they're going into my PMR briefing book!
Sending appreciative and warm regards.....