Posted , 12 users are following.
I have at long last tapered down to 4mgs. of Pred, & 20mgs. of Leflunomide. I started feeling a bit ropey, so got in touch with Rheum. nurses and was sent for a Cortisol test, which showed it was low. I now have an appointment with Endocrinology about possibly taking some medication to help. Can anyone tell me if this could be permanent, or will the Adrenals kick in at some time in the future? Thanks.
0 likes, 15 replies
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mary19068 catherine34621
Posted
Hi catherine3
When i tapered off pred it took approx 18 months to 2 years for my adrenals to get back to normal. I can't say if that's how long it will take all who have come off pred, but it dose take quite awhile.
BettyE mary19068
Posted
That was my experience, too.
Guest catherine34621
Posted
Hi Catherine,
Your adrenal glands are probably OK. Prednisone suppresses the release of hormones produced in the pituitary gland and hypothalamus that stimulate cortisol production in the adrenal cortex. Low cortisol is to be expected and it will likely return to normal slowly after you discontinue prednisone. Your endocrinologist may check to be sure your pituitary and hypothalamus are working as they should.
Be careful never to take methotrexate with leflunomide. They interact to cause liver damage.
EileenH catherine34621
Posted
It depends - the endocrinologist may feel it is likely that with a VERY slow reduction the adrenal function will slowly return. They may want to switch you from pred to an equivalent dose of hydrocortisone given 2 or 3 times a day - it is shorter lived in the body than pred and that prods the adrenal function more so they wake up . It just takes some people longer than others.
andypolly catherine34621
Posted
Hi Catherine,
I'm at a similar stage: down to 4.5 mg after more than three and a half years with PMR. I'm hoping my body will let me slowly reduce over the next 18 months to close to zero, but I'm not going to rush it.
I'm interested to read what Roger and Eileen have said about the adrenals waking up, and there appear to be 2 different stories. Does the body not start making any Cortisol at all until you have stopped taking pred? Or does it gradually wake up as you reduce very slowly.
At 4.5 mg should I expect my body to start thinking: time to wake up and make a bit of cortisol? Then at 2.5 mg it decides to get a bit more active and then at zero it's fully awake and back to normal?
Or does it sit there doing nothing till I'm at zero and then start waking up?
Andy
mary19068 andypolly
Posted
Hi andypolly
I think it depends on how long your adrenals have been suppressed by preds. The longer they have been out of action the longer it may take for the adrenals to spring back into action and produce cortisol again. I was on preds for just over a year and it took 18 months - 2 years for adrenals to function 100% again. However, it may depend on the individual, perhaps some peoples adrenals may get working again quicker than others. There are natural medication that are said to help the adrenals along, also certain diets. I hope you didn't mind me coming in on your conversation with catherine.....best wishes your way.
BettyE andypolly
Posted
Thank you for your picture of your adrenals sitting there debating whether to get going again. I'm still smiling.
As I've previously reported. it was 15-18 months after getting to zero that my body felt more or less back to normal. In that time, if you are right, my adrenals must have been saying, " What shall we let her do today?" It was not a sudden improvement. Cumulative might be the word I'd use. I got there and so will you.
EileenH andypolly
Posted
No - it is a gradual process, when it works properly.
Once you are at a dose below the equivalent of what the body needs to function then the adrenal glands SHOULD be triggered to produce enough to top the pred up to that level. Whether it happens or not is another matter. If you continue to reduce slowly enough then the adrenal function will also slowly return . But it is a complex process with a lot of organs and substances involved and it is a bit rusty so it may not go entirely smoothly at first. Even once you have got to zero pred and the adrenal glands are coping for day to day activities, they may not be up to dealing with an emergency situation - that's why you should carry a steroid card and inform healthcare staff in particular that you have been on long term steroids for at least a year after stopping.
andypolly catherine34621
Posted
Eileen, and everybody else who's been commenting. Thanks very much for your comments. I thought as much. So I'm waiting patiently for my adrenals to start waking up!
Specifically for Eileen who we all know as a great help in our journey because of her knowledge and clarity in informing us about PMR. You said: But it is a complex process with a lot of organs and substances involved.
I love complex! And of course the more we know, the better we can understand what PMR and pred is doing to our bodies and how to react. Can you tell me/us more about the complex process or where we can read about it?
Thanks very much, Andy
EileenH andypolly
Posted
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5682381/
Does this help?
karenjaninaz EileenH
Posted
Eileen,
I noticed this article is from a pediatric journal; I wonder if it applies similarly to our age group?
EileenH karenjaninaz
Posted
How it works is the same physiology and that was what I was offering it for. I didn't think andypolly wanted a series of physiology lectures - and I wasn't sure I was up for it either
karenjaninaz EileenH
Posted
It was a bit over the top I agree.
Michdonn EileenH
Posted
EileenH, I found the article interesting and informative sense I am in the adrenal wake up mode. So days are worse than others, but I just keep pushing, a little more each day. Thank as always. 😉
andypolly EileenH
Posted
Eileen. Thanks very much for this. Very useful. I love the science! But not the PMR.