Steroid Tapering, Secondary Adrenal Insufficiency

I am cross-posting this article from the National Adrenal Diseases Foundation because I think it deserves its own thread.
It gives an excellent explanation of how steroids suppress ACTH, causing the adrenal glands to atrophy, and how symptoms of adrenal insufficiency will result as prednisone is tapered below 5 mg.

It is worth reading all of it, but I have excerpted the most relevant parts.

Some interesting points:

• If you take steroids for a significant amount of time you WILL develop adrenal insufficiency.
• Adrenal Insufficiency can become permanent {I have not been able to confirm this, though!}
• Tapering below 5 mg prednisone must be done VERY slowly, depending on how long you have been treated.
• The symptoms of this tapering are the result of adrenal insufficiency.
• Some degree of adrenal insufficiency is necessary to restart your adrenal glands.
• Additional steroids may be necessary in case of illness or trauma.
• Every adrenal insufficiency patient should wear an identification bracelet or necklace.

www.nadf.us/adrenal-diseases/secondary-adrenal-insufficiency/
Secondary Adrenal Insufficiency
What Causes Secondary Adrenal Insufficiency
The most common cause of suppression of ACTH is the use of glucocorticoid medications [which] are steroid hormones that act like cortisol. They include cortisone, hydrocortisone, prednisone, prednisolone, dexamethasone {...} When the cells in the pituitary recognize any of these drugs, they sense that there is cortisol present and therefore produce less ACTH. This ACTH suppression {...} can be very temporary, prolonged, or permanent depending on the dose, potency and length of use of the medication. For example, a few days of prednisone will not produce a significant problem, but several weeks of prednisone at a dose of 10 mg will diminish the cortisol level and the ability to fight a stressful situation. Recovery of the pituitary-adrenal response after use of a suppressive dose for more than one month will take about one month. Generally, this one for one recovery time is typical up to about 9 to 12 months, when recovery will often take up to a year or may not occur at all.

What are the Symptoms of Secondary Adrenal Insufficiency
The symptoms are related to the degree of cortisol deficiency, the underlying health of the individual, and the rate of reduction in cortisol level. The most common symptoms are severe fatigue, loss of appetite, weight loss, nausea, vomiting, diarrhea, muscle weakness, irritability, and depression. {...}

If secondary adrenal insufficiency is anticipated, {...} appropriate treatment may prevent any symptoms. However, if it is not expected, there are likely to be progressive chronic symptoms that may be missed or ignored until a sudden event like a flu virus, an accident, or the need for surgery suddenly precipitates a dramatic change for the worse. This is an adrenal crisis and is a medical emergency.

How is Secondary Adrenal Insufficiency Treated
{...}The management of those who have developed secondary adrenal insufficiency from prolonged use of steroid therapy presents a challenge. Once glucocorticoids have been tapered to below 5 mg of prednisone, dosing for stress such as illness or surgery is still needed until there is full recovery of adrenal reserve, typically using a guide of one month for each month that steroids had been used. The most difficult issue is that symptoms of adrenal insufficiency will be present during the tapering phase, because low levels of cortisol are the only trigger to the pituitary to stimulate the return of ACTH production and the restoration of normal pituitary-adrenal responsiveness. The longer high dose steroids were given {...}, the more likely that individual will suffer from adrenal insufficiency symptoms on withdrawal of the steroids. In addition, tapering off the steroids may cause a relapse of the disease that had been treated, causing a combination of disease symptoms overlapping with adrenal insufficiency symptoms. That is why it is very common for steroid tapers to be aborted, with a temporary return to therapeutic doses of glucocorticoids, followed by a slow attempt at tapering if the primary disease is in remission.

Why Should Secondary Adrenal Insufficiency Patients Consult an Endocrinologist
{...} Most cases of permanent secondary adrenal insufficiency should be managed by an endocrinologist. In cases of steroid withdrawal for the treatment of medical conditions, endocrinologists often work with the primary physician or specialist in that disease to assess the recovery of pituitary-adrenal reserve and provide guidance about whether long term glucocorticoid therapy is needed.

I absolutely do believe it can become permanent. I'm in that boat now.

An excellent idea to cross post Rob as I doubt everyone would have spotted it before when you posted it on my topic.

extreme fatigue and weakness, lower back pain, irritability, and depression once i get to 5 mg.
i can't seem to get off of the stuff.
the numbers bottom out every time.

Rhoda- yes as you've discovered, prednisone is usually a temporary boost- a rescue treatment, but does not often achieve sustained counts. Most people go onto other more tolerable and more effective treatments.

Thanks for the article Rob! Yah, I hear ya! haha I am tapering prednisone right now after being on it since July 2015. My doses have been somewhat lowish, below 20mg mostly 12.5mg and lower but still its hard to withdraw from this stuff!

I follow a tapering schedule that my hemo and I came up with a couple years ago. Its pretty good. I've posted it before but will again for anyone in the same boat. I taper fairly quickly down to 7.5 without problems. But then I begin to slow it down. I then reduce the dose by .5mg every 5 days to a week. I alternate doses for a few day at the end of a week to weave the new dose in- this is especially important when the dose gets below 2.5mg. I've noticed thats when the symptoms of adrenal insufficiency start to hit, below 2.5mg.

If I'm having trouble on the new dose, I will spend more time alternating days with the prior dose, maybe for an entire week. For example 2.5 then 2mg until I'm comfortable on the new dose of 2mg. Going slow like this makes it so much easier! I don't believe in suffering the withdrawl symptoms too much. Yes like your article says there will be some symptoms but it seems easier on my body if I take time with the taper.

I've been reading posts on other forums of people tapering prednisone- hey misery loves company! And so many people are having terrible experiences all because they are tapering way too fast. Its often that they want so badly to get off the drug that they make big jumps in their taper thinking they will feel better if they can just get off "this poison"! I understand the thinking. But in my experience it doesn't work well that way.

Your article reminded me that I really need to take special care of myself while I'm tapering and after I'm off pred perhaps for many months to a year. Sleep is especially important- lots of it, and just relaxing.

More research is needed regarding the possibility of eliminating steroid dependence.
Somebody please steal my idea!

Steroid dependence - resulting in difficulty withdrawing from steroids, adrenal insufficiency and sometimes permanent adrenal failure - should be completely avoidable by artificially stimulating the adrenal glands to keep producing while glucocorticoid steroids are used long term.

ACTH is a hormone produced by the pituitary signalling the adrenals to go to work producing cortisol.
CRH is a hormone produced by the hypothalamus signalling the pituitary to produce ACTH.
Glucocorticoid steroids suppress the production of both CRH and ACTH - causing the adrenal gland to atrophy.

Artificial ACTH (cosyntropin) and artificial CRH (corticorelin) are both commercially available, but their use is very limited by their listings. I would expect that if either one, especially ACTH, were administered, the adrenals would produce cortisol in spite of the presence of steroids, and therefore the adrenals would not atrophy.

This seems to me a missed opportunity by the drug companies, as it could be a sizable new market, and it could be a good research project for some PhD student.

So I have a question to pose to you all...how do you find an endocrinologist who even believes that your symptoms are due to adrenal insufficiency and doesn't just dismiss them? Most Hematologists just want to get you off the Prednisone and pay no mind to your withdrawal symptoms. Endocrinologists can be no different. Just because your blood work looks good doesn't mean you don't have withdrawal symptoms, but most doctors shrug it off as being in your head.

What blood work are you talking about, specifically?

I'm not quite sure what you are asking. Are you still on Prednisone?

MommaBear,

Symptoms of steroid insufficiency will usually occur as prednisone dosage is decreased below 5-10 mg, and especially after it is discontinued. It can take months to recover. The only way to get over it is by going through it, slowly tapering the dosage based on symptoms. If after many months symptoms remain, only then is testing usually done.

The ACTH stimulation test is the gold standard for diagnosing adrenal insufficiency. This test is not given if you are currently taking prednisone.

From your earlier post it looks like you have taken prednisone at the most six months at a time, which is usually not long enough to cause permanent secondary adrenal sufficiency.

Autoimmune disease causes 85% of primary insufficiency (Addison's disease), and having one autoimmune disease, such as ITP, does increase one's risk of other autoimmune diseases.

As to your question of where to find an endocrinologist not dismissive of your symptoms, you might explore the web page for the National Adrenal Diseases Foundation for resources: www.nadf.us/links-resources/
It is they who put out the article at the top of this thread. You might look there for a support group in your area which might be able to direct you to a more sympathetic endocrinologist. You might search listings of various endocrinology associations for physicians with an interest in Addison's disease; if not, an endocrinologist with an interest in Cushing disease might be good for you, as Cushing patients invariably develop secondary adrenal insufficiency (usually temporary) after their condition is corrected.

The American Association of Clinical Endocrinologists at www.aace.com/ has a search engine for endocrinologists with certain specialties.