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147426 tn?1317265632

STEROIDS - FRIEND AND FOE

STEROIDS - Friend and Foe

Recently on the forum we've had several discussions about steroids.  It is clear that there are a lot of misconceptions and fears about them, so this is a very basic discussion about taking steroids, their actions, side effects, long term effects and potential dangers.  First, we need to be clear that we are talking about the body's natural steroids and not about the anabolic steroids misused to gain abnormal strength and muscle mass.  The category of steroids we use in the treatment of MS, of inflammation, and of autoimmune and allergic diseases is called "corticosteroids."  The main one in the body is called "cortisol."  This is the one we are discussing here.  Cortisol is produced by the adrenal glands, which are hormone glands that sit on top of the kidneys - one on each side.   Specifically cortisol is made made the outer layer of the adrenal glands, the adrenal "cortex."  Cortisol is made constantly by the body but, has a pattern that produces it highest in the mid-morning and in the lowest amounts at about 1am to 2am, a couple hours after going to sleep.  The adrenal gland is regulated mainly by the pituitary gland in the brain, but is also affected by many other factors.


What does Cortisol Do?

Cortisol has many, many functions in the body.  It's most important purposes are to support the vascular system, helping to regulate the blood pressure and the salt balance, or "electrolytes" in the body.  Another critical function of cortisol is to help regulate the glucose in the blood.   In fact, another name for the category of hormones that cortisol belongs to is "glucocorticoid."    This name comes from "glucose" and (adrenal) "cortex."   Cortisol plays a role in proper bone metablosm.  It also plays a part in fat and protein metabolism and storage and in supporting the the immune system.  We cannot live without the constant production of cortisol.  Without enough of it many organ systems' functions break down.  A complete deficiency which goes untreated can be fatal.  The name of the disease in which cortisol is not made in sufficient quantities is "Addison's Disease" or "Adrenal Insufficiency."

While too little cortisol can be fatal, too much is a problem, too.  Too much cortisol and we put on weight around the trunk.  Glucose metabolism goes wonky and we may develop Insulin Resistance or Type II Diabetes.  Prolonged overproduction of cortisol can cause osteoporosis, imbalance in other hormone systems, weakness, cataracts  and disruption of the immune system.  This is only a partial list. The major disease  of prolonged over-productuion of cortisol is called Cushing's Syndrome.

There is very little difference between many of the corticosteroids we use in medicine and the action of cortisol in the body.  The simplest, hydrocortisone, is virtually identical in the body.  However, many types of corticosteroids have been developed to minimize one of more of cortisol's undesirable effects.  For our purposes, when we talk about using steroids, we are essentially talking about giving the body larger doses of what it already makes - Cortisol.


Main Immediate SIDE EFFECTS:

Potassium loss - this can lead to muscle cramps, heart palpitations,

Sodium retention - this leads to fluid retention and edema

Appetite increase - The longer you take it the more weight you tend to gain.  This weight tends to deposit in the belly, at the base of the neck and in the face

Mood changes - this can be anything from a euphoria to grumpiness to overt severe dpression

Energy changes - the usual is increased energy, but some people feel listless

Insomnia - This is related to increased energy and stimulated mood.


Why are Cortisosteroids so Helpful?

First off, cortisol does more than just keep everything functioning smoothly.  In times of severe stress the adrenal glands are immediately directed to make huge amounts of cortisol to support life.  For instance, in the case of a person severely injured in an accident, the cortisol works almost immediately to maintain blood glucose to prevent tissue starvation.  It supports the blood pressure by feeding extra electrolytes like sodium into the blood to expand its volume.  We depend on a properly working adrenal gland to help us survive  physical stressors like injury, infection or disease.

In the mid-20th Century scientists discovered that Cortisone (the medicine equivalent of the body's cortisol) was very useful for calming down many diseases which caused severe inflammation in the body.  For a long time it was the only medicine we had for diseases such as Rheumatoid Arthritis, Lupus, Eczema, and dozens of others.  They discovered that high doses would help break the most severe asthma attacks and that it could help save the lives of people with shock from certain, severe, bacterial infections.   It could be used along with cancer chemotherapy to increase cancer survival.  It helped allow organ transplant by suppressing the rejection response of the recipient.  

Over time, though, it became clear that steroid use was a double-edged sword.   People on high doses for a long time suffered from suppressed immune systems which allowed serious infections to take hold that a normal immune system would fight off.  Latent tuberculosis might become active.  The bones became thin and people had fractures from minor trauma.  They put on weight around their girths and face.  The skin thinned and became shiny and loose.  People developed Type II Diabetes.  Cataracts were common.  Very high doses could cause beeding ulcers in the stomach.  Sudden gastric bleeds could happen within just a few days of using very high doses of steroids.


17 Responses
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147426 tn?1317265632
There is next to ZERO absorption of steroid into the body from 1% hydrocortisone.  You would have to slather it over your body and wrap plastic wrap to get this strength to penetrate into the skin at all in an adult.  The only danger would be in infants who have very thin skin and are more likely to absorb it.  Even then it would take fairly large amounts.  This lack of toxicity is why this very, very weak strength was approved for over the counter use.

I would seriously doubt that your symptoms could be from withdrawal of steroids, and they are not suggestive of that either.  You have something else causing your symptoms.

I think you can stop worrying about the steroids completely.

Good luck.

Quix
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Avatar universal
I applied 1% hydrocortisone cream on my groin for around 4 months just to prevent the rash from coming back on. But soon as i found that it has steroids in it I stopped using it. Soon I developed bad stomach pains and was nauseated most of the time. I went to the doctor, and he diagnosed me with pancreatitis. Actually, I didn't mentioned to him that I was using 1% hydrocortisone cream. Its been 6 months now and I don't have any stomach pain. But in these 6 months I have been feeling some withdrawal symptoms (weakness in my arms and legs, muscle twitching, stiffness in chest, dry skin and scalp, acne eruptions, and anxiety). Are these symptoms associated with HPA axis suppression? Would it return back to normal on its own? how much time it would take? I am also skinning out. The last 6 months have been frustating. I think you have a great knowledge about this topic. Please guide me.
Thank you.
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147426 tn?1317265632
bimpity-bump for jrterriers
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199980 tn?1233797404
Thanks Quix, you helped alot......
hugs
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428506 tn?1296557399
Thank You many times over.  A "Diagnostic Trial" sounds fine to me!  She actually suggested doing this months ago, but I shied away feeling like it was a bit of a shot in the dark, plus my fear side effects.  I was very uncomfortable with the idea of trying to treat something that was not diagnosed.  I'm the sort to not even want to take an aspirin for a headache.  Well, I'm like, totally over that!  I know I complain too much, my "awful" is surely great compared to the "good" of others, but I've just had it.  I don't care what it is, it's time to start throwing stuff at it!

I am holding off just a bit more to have my 1st appointment with the neuro-optha this Thurs.  I figure let him see me as-is, hear what he has to say, and tell him the plan to try the Prednisone.  I am really looking forward to trying it, and thanks to this post I feel informed about what to expect.  I'm really hoping my vision goes back to normal, as that is the symptom I worry about the most (atleast today, lol).  I can't wait to let ya'll know how the appointment and steroids go!


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293157 tn?1285873439
Oh thank you for this information, you are such a great help with my questions and help me through all of these trials.  

my leg felt so much better the day after I took the first prednisone..I did get bad headaches... my vertigo spells were gone for 6 days...but when I finished the 6 days..
boy,  I slept for two days and felt horrible...lots of pain...my leg just went back to being weak and I'm off balance..I had a spell again that night after my last pill...so I did feel good except for headaches, and vision was bad...

by day 7...I was bad again...so I guess we will see what the Neuro says when I see him july 18th..

thanks again Quix

andie
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Avatar universal
Quix, Thanks for all the great info.!

I thought you would get a kick out of this since you are familiar w/ Provigil and Lyrica . . .  

I had my first-ever dose of Prednisone last Fall --- and I too, got that "sense of well being and euphoria!"

Especially since it was prescribed by my PCP on the same day that I saw my Neuro# 1 who gave me two 7 day free samples for Provigil AND Lyrica!  Neither DR knew what the hect was the matter with me - but I must have seemed awfully pitifull .

So my Neuro said it was fine to start all three meds the same day -  - -

and I was literally walking on air - never felt better - had the most organized kitchen cabinets in America - --- and then I crashed on day five!  

It wasn't pretty!

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147426 tn?1317265632
Winky Wonk - I understand the use of steroids used "to see if you respond."  This is called a "Diagnostic Trial" of something.  Your doctor wants to see if your symptoms repsond to steroids.  If they do it indicates that your symptoms (or the ones that respond) are at least partly due to some inflammatory process.

The kind of MS mimics that respond best to oral steroids would be the autoimmune diseases like Lupus, Sjogren's Syndrome, some other forms of arthritis.  The mimics that are infections like HIV, syphillis, and Lyme disease will not repsond that well to steroids and may get worse.  The problems with blood clotting and heavy metals generally will not improve.

But, people with MS will also sometimes improve somewhat.   Optic Neuritis may improve.  General pain may be better.

Also, many people "just feel better" on steroids.  They may get a sense of well being and euphoria.  I am one of those people.

So, I'm not sure exactly what he is looking for, but I won't criticize the effort.

Wonk and Wobbly - How long is a prolonged course?  As a one-time course, I was taught that 10-days and less was very safe.  That is what I also used for the entirety of my 23 years in practice.  No taper is necessary.

But, in MS, we might get a 5 day course (fine) for a relapse and maybe another a few months later.  Is this second one, then, part of a prolonged course?  (We're at a total of 10 days here)  No one can perfectly answer this, but the answer is probably "no."  What about the person that gets 2 10-day courses spread apart in a year.  Are they safe?  Now we are looking at 20 total days in the year, and the safest thing would be to have this patient wear a "Steroid Dependent" alert.

In reality, people get repeat courses of steroids frequently for all manner of illnesses like asthma, and we don't see signs of insufficiency.  But, the people that study the adrenal gland say we are taking some chance; that if those  patients were to be severely, physically stressed, they could be in trouble.

It's a great unknown area, unless you are constantly doing cortisol measurements and "stimulation" tests, which is not a feasible thing to do.

Most docs would agree that three longer (10 day) courses within a year and you could predict that their adrenal glands would be less responsive.

April - I assume your fourth round means 4th 5-day course.  As far as steroid dependence, you're "starting" to get into the area of concern.  But, each course is very short and that gives you far less risk.  The little research data on oteoporosis that is available sound like you are not in particular danger from that.  But, it would be only prudent to get a DEXA scan as a baseline.  In addition, have your regular doctor check your Vit D level, take 2,000IU of Vit D daily if your level is low (below 30) and maintain good Calcium supplements.  Have a fasting glucose checked along with your BP periodically.

Well, Did I waffle enough to get out of answering everyone's questions?

Quix
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293157 tn?1285873439
Great article...very helpful...thanks Quix

I also would be interested as Wonko asked...

I took Prednisone for 6 days to help when I was having a hard week,  my Dr also said lets see if it works or not...how it works etc...

what would this indicate?  if it works?  if it doesn't?  

does this give the Neuro some info that might be useful to them??

thanks again..
andie
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199980 tn?1233797404
what would you conceder prolonged use?
I am just starting my 4th round of steroids due to my 4th attack in a year.
I worrie about the long term effects.
thanks
april
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198419 tn?1360242356
This critical piece is outstanding!  I love the way you've written it - so well done.

Thank you so much!

Can we put it on Health page?  Please, huh, huh, can we ma'??? Let me know if you need me to copy it, start it, etc. . .

-Shelly

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465975 tn?1224231635
Thank you my friend so much for the information. Your expertise is such a great asset to the whole fourm. For that I just want to say thank you. I have read your article with great interest as we have discussed in the past, I am taking steroids to try and fix the double vision. I have taken new precautions since our conversation about taking steroids over long periods of time.
Thanks Again Quix,
Mike  
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Avatar universal
AMO
oh Quix, this  is a fine fine essay,
thank you so much fforyouur   energy and     knowledge here.
My late FIL had addisons, and  i  take fllorinef  for treating   low b.p.
Thank goodness for steroids.

i appreciate thhhe time youu wrote this and making iit rather underestanding.
kuddos, amo
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393986 tn?1303825975
You definately hit the nail on the head with this one, Sweetie.  I am a steroid dependant person and you literally saved my life when I listened to a not so tentative nurse and stopped taking them.  I would not be here today if it hadn't been for you.  I will always be eternally grateful for that.  Thank you so much for that.

Having been through a "crisis", it is a terrible feeling, almost like you know impending death is coming.  Your body becomes its own thing and there is no control over it.  Its almost like an out of body experience, the confusion, weakness, dizziness and nausea.  It is a very, very scary thing.

Thanks for this thread, Quix.  It is going to help a lot of people. :)

Love Ya,

Ada
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147426 tn?1317265632
What About Other Long -Term Side Effects?

One other side effect that is concerning MS doctors currently is whether or not repeated, short bursts of steroids will cause osteoporosis.  There  is not much in the medical literature looking at osteoporosis and steroids the way they are used in MS.  There is one small study that looks at short bursts done "repeatedly" and it found no evidence that this causes osteoporosis.  My neurologist has a colleague who has collected, but not published this data, who also found that very short bursts of steroids (he uses 1 day every month), done over a long period of time also does not cause measurable loss of calcium from the bones.   Note that this would only be 12 days of steroids widely spaced over a year.  But, this issue is not settled.

The person should have a baseline DEXA scan and take supplemental Vit D and Calcium.  The DEXA should be followed regularly.  I don't have a specific schedule.  that would be determined by the patient's treating physician, taking into account the patient's age, scores on the DEXA scans and the amount of steroid being used.

Cataracts are a known complication of long term steroid use.  I was always taught that cataracts are an effect of cummulative dose.  Thus, a person receiving regular, prolonged or repeated steroids should have full eye exams yearly.

Type II Diabetes - Regular, prolonged or repeated steroids can push a susceptible person over into Type II Diabetes.  So, a regular check on the fasting glucose is mandatory.  Known diabetics may need increased medication during times of steroid use.  

Hypertension - Steroids act to raise the blood pressure during the time they are given.  In people with hypertension the BP should be monitored the entire time on steroids and afterward to ensure that the blood pressure has returned to its previous levels.

Other topics like Immune suppression and how steroids are used specifically in MS will be discussed in other essays.

Stay tuned,

Quix
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147426 tn?1317265632
The Hidden Problem with Prolonged Steroid Use

But, there was a side effect that was a little less obvious.  With "prolonged" use the adrenal glands would slow or stop their normal production of cortisol.  In the body the adrenal gland is able to "monitor" how much cortisol is circulating in the bloodstream.  When we give someone a corticosteroid like cortisone, prenisone, or methylprednisolone (Solu-Medrol) the adrenal glands "see" this as extra cortisol floating by.  Since there is more than enough (because we are taking higher doses than the adrenal gland would normally produce), the gland sits back and decreases how much cortisol it makes.  So far, so good.  A nice feedback system.

Ideally, in a feedback system like this, the adrenal gland would just immediately resume making the needed amount of cortisol when the person stopped taking the oral steroid.  And, this IS what happens if the extra steroid is taken for a "short" period of time (days).  However, if the gland sees extra steroids in the blood for too long (more than a week and a half or so), then it gets lazy.   It might not kick back into action for a few days or more.   If the medication is taken for long enough, the adrenal gland may actually shut down and go on vacation.   (It has been reported as far away as the south of France).  The medical term for this is "adrenal suppression."  The problem is that we don't have a perfect definition of "short" and "too long."  Many doctors that use steroids routinely feel that a course of about 10 days does not usually cause a problem.   A normal person can take a full dose for that long and stop it abruptly without suffering adrenal insufficiency.  Other doctors disagree and feel that anything over 6 days in a row can have significant effects on the adrenal glands.  They recommend a taper after a shorter time on steroids.  I was taught and very frequently used the 10 day course.  I never had a problem with it.

What about the person that needs another 10 days a few weeks or months later?  This is where it is hard to predict how a single person's adrenal gland will react.   What we do know is that the longer a person takes steroids and the more often a person takes steroids, the more likely they are to suffer adrenal suppression and have adrenal insufficiency if they stop the steroids abruptly.  This is where the "steroid-taper" comes in.  If you slowly lower the dose of steroids over a time that corresponds with the length of time they were used at high dose, the adrenal glands will usually wake up and get the production of cortisol started back up.

Over the years, though, we learned that each time the adrenal glands get suppressed within a year or so, the more sluggish they can be about returning to active duty.  So, as we give steroids to people in repeated, longer courses, the more careful we have to be about tapering them off.  Again, as we said earlier, it is more related to the "length of time" on steroids than to the dose.

Any person that has been on significant steroids for long periods or repeated periods should be presumed to be at least somewhat adrenal suppressed.  The medical term for this is "steroid dependent."   While their adrenal glands may get them through normal times just fine, it might be that they will not be able to respond with enough cortisol in an emergency.  These people should wear alert pendants or bracelets to inform medical personel that in an emergency they might require extra steroids.  This is so critical that paramedics know to immediately give hydrocortisone while still in the field.  

Once a person is felt to be steroid-dependent, it should be assumed that their adrenal gland may not respond sufficiently in a crisis for the next year, presuming that no more steroids are given in that time.  The year continues to extend after each course.


Stopping Steroids Abruptly and "ADRENAL CRISIS"

If a person has been taking medical steroids for long enough to really suppress the adrenal gland, and if they stop the steroids abruptly, the consequences can be disastrous.   The symptoms that result are termed "Adrenal Crisis" or the older term "Addisonian Crisis."   Within a day or so of stopping the meds they may begin to feel weak, nauseated and begin vomiting.  Without cortisol the body cannot adequately keep the electrolytes balanced, and the person's sodium may drop dangerously.  This can cause brain swelling, confusion and can lead to coma and death.  The person becomes progressively dehydrated, glucose levels may drop to a degree in which the brain cannot function, and the heart and vascular system become unstable.  If this goes untreated the result can be cardiovascular collapse, coma and death.

The treatment is first to recognize that this isn't just the flu and to seek emergency treatment.  The treatment is simple.  Lots of IV fluids that contain sufficient electrolytes and fairly high doses of IV steroids.  Once the person is stable, a proper tapering program of the medical steroids must begin.  The taper must be quite slow and with every drop in dose the patient should be evaluated for the early signs of adrenal insufficiency.  A large part of this is patient education.  A good discussion of the symptoms of Adrenal Crisis can be found at:

http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/000357.htm



So, Are Repeated Courses of Steroids Ever Safe?

Actually, yes, maybe.  Over the next 40 years, there has been a lot of research into what doses of steroids were safe and how we could minimize them.  In my teaching, reinforced with discussion by my current neurologist, a couple of of 3 to 5 day pulses of steroids are safe and don't require a taper.  He prefers not to use these more often than a month apart, but feels that needing them very often (except for the occasional severe relapse) means the basic therapy or DMD, needs to be changed.  A very common pattern of steroid use in MS is to augment the DMD with a monthly, 1-day, high-dose infusion.  This would give a total of 12 days of steroid use a year.  The duration is only one day, barely enough for the adrenal gland to notice.  The recovery interval is a full month.  He has not seen adrenal suppression using this.  This is also likely true with the use of 3 to 5-day infusions at longer intervals.  Again, though, it's the "total time" on steroids, plus the length of time they have to recover, that is important.  There is no hard and fast rule that every person's body will follow.  Again, if you add in a couple 3 to 5 day courses  given for relapses or Optic Neuritis during that year, then it is not as clear what the adrenal gland's status would be.

Con't below
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428506 tn?1296557399
I sure will stay tuned, this is very helpful of you to add.

May I pop in a Q for the Q?

My doc prescribed prednisone even though we don't know what is wrong with me.  She said depending on if/how I respond, it may tell us something.  Can you, when you get a chance, maybe say a little something about this?  I was trying to look up if cortisosteroids can help with symptoms of Fibro or other mimics.  Can the response to steroids shed any light on the situation of undiagnosed folks?

Sorry for being needy, but if the muse come back to you soon, I'd greatly like to read of your opinion and info on steroids/MS mimics.

Thanks, and now to go back and re-read your 1st two installments!
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