Rush

I woke up yesterday, very clear in my lungs. No tightness. Didn't need any albuterol and, as a result, I decided to stop the steroids. Still congested in my nose though with a productive cough, but I think I'm winning the war. Finally, 20 days later.

Since I felt so much better, I did the 'Rush' Zumba workout which is 20 minutes. I didn't go full force, kept it light but worked up a sweat.

Being sick reinforces my decision to do the DVDs over signing up for a class. It's vital that I go at my own pace, in my own time. Strict schedule adherence is impossible for me still and sometimes I modify things in a way that would make me very awkwardly stand out in a group class.

It feels so so SO good to use my body again. I hate being sidelined (doesn't everyone?). I think a lot of my ability to even do this much so soon stems from the IV nutrition therapy. I'm a total convert, about to become a zealot.

By the way, I did find one study on IV therapy for asthma. They hyped magnesium but there's also mention of nutrients like B12."Patients who received longer-term therapy (average duration of 12.58 months) for chronic asthma demonstrated an overall average improvement of 95%." That's pretty interesting. If there's a way I can better manage this stuff with less disruption of my life, I'm all for it.

As for the rest of the day post-Zumba... I overdid it a little bit. Ran three errands and my lungs got a bit raw and reactive. That tired me out and I was happy to go to bed.

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Patient Friendly Steroid Tapering for HPA Axis Suppression (aka Secondary Adrenal Insuficiency Due to Steroid Use)

All too often the only tapering regimen offered to patients whose HPA axis has been suppressed is one single am morning dose.

For the majority of patients this is probably fine. Their HPA axis probably can't wait to wake up.

For me? This is a nightmare.

If you are suppressed and tapering is not going so well, here's my dream tapering regimen. One that should minimize pain and maximize energy.

Oh yes, standard disclaimer: Not a doctor and not pretending to be one either. Follow advice on this blog at your own risk.

1. Switch to hydrocortisone. The half life is shorter, which stimulates the HPA axis at night. This is key because recovery will be hindered if steroids are in your system 24/7. The brain needs to be steroid free at night in order for the HPA axis to begin to wake up.

2. Split dose. The bulk of the dose should be in the morning with a small boost around noon. Just to be clear, this is NOT what patients with permanent adrenal insufficiency do. This split dose is designed to keep patients upright during the day while also allowing the steroids to be out of the system at night per #1.

3.Over time, slowly take that noon dose earlier and earlier until it merges with the morning dose. Start with 11:30, then 11, 10:30 and so on to tolerance. Try changing the time every 2 to 3 days and see how it goes.

4.When you can get through a whole day with just an am dose, you can start to cut pills. Up until this point, just moving that noon dose has been your taper.

5.Slow and low is the name of the game. Taper by 1 to 2.5 mg, no more. When your HPA axis is up and running the tapers can be bigger and faster, but until then, the slower and lower, the better. The turtle wins this race, not the rabbit.

6.Whenever you feel good, that's a sign it's time to taper. Feeling good means your body is producing cortisol to fill the gap left by the previous taper and it is safe to taper further.

You don't want to taper before your body has adjusted, that's a brutal thing to do. Going too fast can also put you in the hole. Looking back, I realize I frequently flirted with an adrenal crisis by tapering too fast and underdosing when I had problems. Don't do that.

If you listen to your body, it will tell you what you need much better than any physician or blood test can.

7.Don't taper in the 10-12 days leading up to a menstrual cycle. The hormonal changes can be hard on you when you're suppressed. Now, if you go through a cycle and it's no big deal, then feel free to experiment, but watch yourself closely for signs of strain.

Also avoid tapering during especially busy or stressful days. The day you tell your spouse you want a divorce, for example, would not be a good time to taper.

8.Increase the dose when you are sick or if your parent dies or during any other stressful event. You can wait until your body tells you it needs the steroids, you don't have to make a preemptive strike. Your body will very painfully tell you when it's not making it.

Keep steroids handy so you can take them the second you hit the wall. Within an hour you should feel better. If not, you either need more steroid or the adrenals are not the problem and it's something else.

As for how much to take, well, there are no guideline for stress dosing in the midst of HPA axis suppression. Most docs will not give out any information under the belief that stress dosing is not necessary for suppression (it is) or will pull from the literature on patients with permanent adrenal insufficiency, which does not reflect the core goal of stimulating cortisol production. So you will have to experiment because, with suppression, the goal is always to take as little steroid as possible.

Will an extra 5mg do it or do you need to double or triple the dose? Early on, this will be very hard to decide, but your body will teach you the rules it's going to live by and you'll eventually know exactly what dose you need in various scenarios.

The nice thing about suppression is, if the dose isn't right, your body will cease to function until you take more steroids. There's little room for misinterpretation. Can't get out of bed? Take 5 more mg!

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Trying

Wednesday went.

Trying to get as much done as I can now since I don't know how I'll feel later. Do what you can while you can.

Ran to the craft store for stocking stuffers and styrofoam cones which will be used for Xmas tree appetizers (you use toothpicks and fruit or cheese, it's cute and easy). Felt like I was going to fall over, but just gripped the cart tighter and ignored it.

Making menu plans that minimize work. Luckily the hubby does a lot of the holiday cooking. In his culture they have fish, kidney beans, split peas and potato salad for Christmas Eve dinner. I happen to love beans and peas, so this meal works well for me although other people find it...odd.

Then he wants to make Nutella banana crepes for Christmas breakfast. Plus, he'll do dishes. So not too much on me for the big holidays. Yes, he is amazing. (Further proof, when I told him we could put a porthole in the floor to finally make a laundry chute, he thought that was a great idea. No really, people do it.Nowhere near as a strange as it sounds.)

Presents are mostly done. Need to finish the calendars featuring the toddler and pick up gift cards. Oh and mail Christmas cards. Not to mention thank yous from the toddler's October bday. Whoops.

Taking naps every day, which helps immensely. It gives me a couple hours where I'm not dog tired.

My GI system is making death threats, but not following through. So long as nothing comes along and stresses me out, I might escape unscathed.

Not eating much but trying to follow a rule of eating something at every meal time. The lack of appetite makes for an odd diet. 2 hardboiled eggs, a slice of cheese, cottage cheese, a bite of chicken. Back to the surreal reality of forcing caffeine consumption--that really is the strangest thing to me.

On the upside, I quit steroids cold turkey and am still standing.

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Thanksgiving Day Reading

Slowly recovering and had hoped not to need more than 10mg, but ended up taking another 5mg. I've had energy deficits too big for the steroid dose before, but instead of taking more, I really wanted to try and out rest it.

Except I couldn't wake up still. Some of it is that I need one more night of good sleep to put the bad night of sleep behind me. I really do not handle lack of sleep well, some combination of newborn sleep deprivation PTSD and adrenal weirdness. After the 5mg boost...

Positive dance sign for the win!

*fist pump*

Fatigue was still with me BUT I zumba'd to two songs from Bette Midler's Christmas album. (MP3 download is $5 and well worth it!) Two whole songs! Without sitting down! Without heaviness in my legs! No, it was not the best music for Zumba, but it was a lot of fun trying!

I've also had a positive caffeine sign. Actually wanted my drug of choice yesterday: Coke Zero. I've not been able to finish one since 11/2. Have not even cared if I had caffeine (which for those of you who drink caffeine, you know how weird that is). Well, now I want it which is good even if it's not a good-for-me habit.

Then I crashed and burned. Just did too much, too fast. I need to slow down and rest or else I'll have to take more steroids.

Still, overall, a MUCH better day. Very thankful.

My gosh dang cortisol better fricking come back low. Or else my body makes NO sense whatsoever.

In the event that it's normal, I found an article on steroid withdrawal and the quote below seems pretty relevant to my situation. The theory would be I had the crisis due to long term steroid use and DUH! I need to stress dose. The steroids used to treat the crisis then triggered Steroid Withdrawal Syndrome which, in me, scales up to the umpteenth power. This is what you call 'can't win for losing.'

Full text of article is here: http://www.eje-online.org/content/153/2/207.full

"The form of SWS that we have described, characterised by anorexia, nausea, lethargy, fever, arthralgia, skin desquamation, weakness, postural hypotension, vomiting and weight loss, was recognised as early as 1960, although the exact mechanism of action is not clear, nor is its prevalence (3, 4, 7, 8). Suppression of the HPA axis by the hypercortisolaemic state, whether endogenous or exogenous, was initially thought to be responsible, until the axis was shown to be normal in these patients, with normal baseline cortisol levels (7).

Subsequently, Amatruda et al. demonstrated some suppression of the HPA axis in these patients but, importantly, serial plasma and urine steroid levels were within normal limits, and there was no correlation between the status of the HPA axis and the severity or duration of SWS (4). Hence the condition was attributed to a state of ‘relative adrenal insufficiency’ as tissues had been exposed to high levels of steroids for a prolonged period. It is thought that these individuals develop tolerance to glucocorticoids, such that the replacement doses used are inadequate to allow correct functioning of the central nervous system and other organs (3).

Tyrrell describes the possibility of a relative state of glucocorticoid resistance in these patients, effectively rendering them hypoadrenal (8). In more recent studies, a rise in the level of interleukin-6 (IL-6) has been linked with the acute form of SWS occurring immediately after surgery for Cushing’s syndrome in patients who were hypocortisolaemic, and a similar symptom complex was noted after infusion of IL-6 (9, 10).

Papanicolaou et al. found that even by day 9 or 10 postoperatively [for Cushing's], when these patients were on glucocorticoid replacement, IL-6 levels decreased but were not back to normal (9). Alterations in the concentrations of a number of other mediators have been hypothesised to play a role in the development of the SWS, notably CRH and central noradrenergic and dopaminergic systems, reviewed in more detail by Hochberg et al. (3)."

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Mixed Bag

Well, Monday was not better. It was worse. At one point I began to fear I was heading for real trouble. I must have done too much on Sunday? I just really felt the need to keep living my life and do things that nourish me as a person as opposed to always being benched by my health.

So I went out to lunch with a friend and caught up. It went pretty well. I felt like I was safe to drive, which is not always the case. I was able to keep up with the conversation even though I lost track of my point a lot.

I thought, 'Wow, I'm getting better.'

Then I had a terrible time getting up. Did not sleep well. Had some muscle cramping, which is really weird as I've not had intermittent steroid withdrawal before. If that's what this is.

Finally felt up to making cookies with the toddler. Filled the CD player with Christmas music and we baked (well she baked and alternately danced). There are now 3 dozen cookies in the freezer ready for the holidays in case I don't feel well enough to cook on the exact date.

After that, I was wiped, but I had promised myself I would make a crock pot meal, trying to stem the tide on the take out. My palate has changed enough with low carb that fast food actually tastes like junk to me now. I can not face anymore bunless burgers from various junk franchises. It tastes like crap. (Exception to the rule: I still like french fries.)

I started shaking a bit and getting some back and abdominal pain. Tired enough to struggle with all the various recipe steps. I did eat. but it didn't help. Felt like my bp was low, but I couldn't check it, and hesitated to add salt as feeling low is not always the same as being low. The remainder of the day was conducted from the couch.

On the upside, I was able to make myself eat all three meals, the first time since 11/2. The hubby said I was much more talkative than I've been, and put in topic requests for football and industrial strength leaf blowers.

Perhaps that was why everything he said just bounced off my ears the other day? Because those are not things that interest me. Nor are they anywhere near my area of expertise. If they are your forte, let me know, I'll hook you up with your new bff.

The mixed bag of symptoms means I won't updose yet. It has to be all adrenal all the time before I'll take steroids, but the uncertainty gnaws at me. I never know if I'm doing the right thing. I never know what will happen to my body or what medicine will do to me next.

I remind myself I have steroids. Heck, the ER even gave me a prescription for Zofran so I don't even have to vomit! I don't have to end up in the ER again, but I still freak when there's weirdness. The crisis shook me more than I realized.

Some anger showed up yesterday as well. Anger that this was all preventable. None of this had to happen to me. This suppression never had to be the most severe and dangerous one I've ever had (even if the taper was the gentlest).

What my body is doing is not outside the realm of medical literature. It's not like no one else ever had this problem. It's not like this has never happened to me before either.

All it would take to save me so much pain and grief is one well read physician. Just one.

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Withdrawal or Insufficiency

It has been suggested to me that I'm going through steroid withdrawal right now and not adrenal insufficiency. That could very well be the case. I just don't have any of the muscle pain I attribute to withdrawal, but that doesn't mean it's not withdrawal.

If it's withdrawal, I should progressively feel better this week.

The only thing...I re-read my last several months of posts and wow. I've really been having issues with my appetite and energy. I always tell myself I'm doing great and then whine on here. When I read the whining, I can see how hard I've been pushing. I don't think it should be this hard.

I drove yesterday and was okay without extra steroids. Ate breakfast and lunch, but no dinner. Mostly felt okay. A little wiped and kind of cranky, but there's hope that today will be better.

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Steroid Withdrawal, Muscle Pain and Notes on an Adrenal Crisis

My muscles are spasming enough that when I raised my hands to put mousse in my hair the other day, my pec spasmed until it sprained itself.

Yes, I am now beating myself up.

Then there are the sustained contractions in my feet, calves,forearms and diaphragm. If I hadn't had them before, I would be terrified. It feels like you're becoming a statue, trying to breathe through stone.

Thank God for Advil.

Made it down to 10mg. It's been a little dodgy. The hubby startled me and my body immediately became short of breath. It was weird.

Tomorrow, down to 5mg. Then we see how that goes. If it goes well, I'm stopping. Can not wait get off this poison.

On the adrenal crisis front, I corresponded with an Addison's patient whose BP skyrockets during a crisis. I am beginning to suspect patients must go low just before they die/start to die. I bet there's a significant adrenaline response initially.

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5mg

Haven't heard back yet on the HIDA scan. Doc didn't call me on Friday. I may have missed a call from them Sat morning per the 'Restricted' flashing under missed calls on my cell phone, and no call backs, so I'm SOL until next week, after the holiday.

The 5 mg helped. Slowly. I suspect it was so slow because a)I maybe needed more than 5mg and b)I should've gone to bed for the day (yes, it was that bad) and instead I kept going.

Sitting outside in 90F heat is not really going to help you when your adrenal system has gone haywire. I supervised the toddler at the pool for 2 hours, laying on the concrete during each 15 minute swim break, scrabbling for every little bit of rest I could find.

Then we went swimming again later that day. Basically, I just plowed forward (well, not so much plowed as lurched unevenly). Went to bed early. Slept in a wee bit today. Got up and felt like I was trying to move through Jello, but decided to forgo any more steroids.

Sat morning was rough, but I caught the low blood sugar early, fed it a Godiva truffle (at the mall), and spent the day shopping with my parental unit. It was mildly embarrassing to insist that we stop to eat at 2pm as all I'd had was a flax/almond muffin and that truffle and the blood sugar was NOT happy about it.

Everyone else that has a body that works, they just go without worry of interference. I have to cater to the stupid things my physiology does and it can be awkward because no one understands. I had to get kind of forceful about "I need to eat. I'm going to be sick if I don't eat" and people looked at me weird when I said it. I wanted to melt into the floor.

The good news? I was hungry today. Really hungry. The Jello fog lifted by noon and I felt pretty okay. Like it was a good decision to not take steroids again.

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In a Pickle Stream of Consciousness

The current situation is reminiscent of last August. When I just didn't feel good, but I didn't feel bad enough to take steroids.

I couldn't figure out what was wrong.

Then I crashed hard in September and have been on steroids ever since.

It's not the fatigue that's so bad. It's the weakness and the inertia it induces. I feel like a wet noodle. Just flopping all over the place.

The other day I kept the toddler home from school due to the boogies of doom. As it turned out, I was more in need of a sick day than she was.

I couldn't get up.

Couldn't keep my eyes open.

Couldn't get out of bed.

Three hours later, I had managed to make it downstairs and feed the toddler and take a shower. I thought, we'll go to the post office and the mall to get some vitamins and spend some quarters on rides.

I got up.

And sat right back down.

I tried again.

I sat down again.

Hmmm. Maybe I should've eaten something for breakfast.

Maybe I shouldn't skip meals.

Maybe it's pickle time.

Yep. BP is a little low.

Pickle juice tastes good to me now. Sometimes I even crave it. I think I've blogged that before, but I am so appalled by it, I can't let it go. The toddler thinks pickle juice is an actual beverage and asks for it.

It's normal to her.

Oh my God.

We chased the pickle juice with some suckers. I felt mildly better, but not enough to risk going anywhere.

"Mommy, let's go the post office."

"Can't, bean. Mommy doesn't feel good. Sorry."

Hubby burned dinner so I could rest. Somehow my appetite found its way home and I was ravenous, scarfing down over done (bunless) burgers and rutabaga fries like I'd never seen food before.

Today I updosed back to 20mg to see if that will stop the downward slide.

The thing is, I clearly had too much in my system at 20mg and tapering to 15mg was an improvement for once. So why insufficient now?

This makes me wonder if the HPA axis functionality is uneven. Like it isn't strong enough to keep me going for long periods of time. Or it's randomly coming online and then just free falling.

I know with permanent Secondary Adrenal Insufficiency (which is most like what I have) there is some level of cortisol and ACTH production but it's impaired and can fluctuate.

I wish this would end so I could go back to my life. I thought this was going well. It's not.

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There's a Really Happy Cat in My Lungs

Our holiday was kicked off by boogies. In the toddler's chest. Then in the hubby's chest.

I thought I was safe.

I should know better! I think my optimism is perverted beyond all redemption.

It started with a random wheeze one day.

Huh, I thought and went about my life. I was in the midst of muscle cramp hell so was a little distracted.

Last night a knot of snot took up residence under my breastbone and the hacking cough to nowhere started.

I woke up in the middle of the night with a cat purring in my lung. Just from breathing from my nose, which is bad ju-ju. Anything that shakes, rattles, rolls or whistles, whines and purrs with the gentlest of breaths is baaaaaaaaaaaaad news. Especially with an uproductive cough.

We'll see what happens. It's a bad infection for someone like me; strong and sticky in all the wrong places. I don't want to take any steroids inhaled or oral for it. I don't really want to start Singulair again. So let's cross fingers that it is mild for me and I don't need anything more than a rescue inhaler or nebulizer treatment.

I am not willing to lose ground on the steroid front. The adrenal glands are the priority, not my ability to breathe.

The muscle pain has finally stopped. Things have finally improved and I have successfully weaned down from 30 to 25mg. I am not going backwards. I refuse.

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Steroid Withdrawal Vs. Adrenal Crisis: How to Tell the Difference

First, I am not an expert. This post is going to be based on my personal experience and the reading I've done. There are gray areas. It's not black and white, so you need to be really careful about taking advice from the internet. The problem is, finding a doctor who knows more than the internet on this stuff is hard. Hopefully you can find someone instead of relying on Dr. Google.

Steroid Withdrawal is what happens when you stop taking steroids. It's a pretty immediate cause and effect. Stop steroids and, very shortly, you feel like crap. The hallmark symptom, in my experience, is muscle pain, essentially all over your body. If you happen to work out when it hits, you will find yourself inordinately sore to the point where you won't be exercising again any time soon. That is steroid withdrawal.

It is not dangerous per se, just really unpleasant.

Steroid Withdrawal can also cause low blood sugar and low blood pressure similar to an adrenal crisis, but unlike an adrenal crisis, it's not an emergency. You can treat the problem yourself by increasing salt consumption and eating a few more simple carbs every day.

You should notice an almost immediate improvement with salt and sugar.

Steroid Withdrawal will resolve in a week or two--longer in some cases. The trick is to manage the pain with Tylenol/Advil, eat salt, eat sugar and rest until the worst passes. You should notice a slow, gradual progression of improvement which is a good sign that it's steroid withdrawal.

With regards to the pain of steroid withdrawal: For Cushings patients, who actually have brain tumors that cause steroid-like problems, they often get prescription narcotics for the muscle pain of steroid withdrawal (which is really cortisol withdrawal for them because in Cushings your body makes way too much 'steroid' all by itself, but the symptoms are identical to steroid withdrawal). So the pain is significant. No doctor is going to give you narcotics for this because they rarely have much experience with it, so don't expect that, but realize the muscle pain can be severe and you will still be okay.

The treatment for steroid withdrawal is either time and sucking it up or some doctors will compassionately prescribe more steroids and do a slower taper to give your body time to adjust. In my reading, the doctors most likely to prescribe steroids for withdrawal are Rheumatologists or GI docs. Any other specialty and you are most likely out of luck.

An adrenal crisis is what potentially happens when your adrenal gland function has been suppressed by the use of steroids. Typically, steroid use longer than 5-14 days at doses higher than 5mg of prednisone can result in adrenal suppression.

Suppression means your body is literally not making the steroids you need to function. It forgot to 'wake up' after the prescription steroids stopped.

Which can lead to an adrenal crisis, but just because it can doesn't mean it will. Most people are fine. The vast majority of people are luckier than me in this regard.

For me, the hallmark adrenal crisis type symptoms I have are the stomach/back/flank pain along with nausea, diarrhea, profound lethargy, feeling like I'm going to pass out, shortness of breath, loss of appetite, low blood pressure sometimes with accelerated heart rate and complete inability to function in my daily life.

The dishes don't get done, I can't work, I can't exercise. My life screeches to a halt.

Sometimes people who ask me if their adrenals might be a problem are also working full time, working out every day and regularly cleaning their house. That level of function is NOT possible with acute adrenal insufficiency. There is no living, there is just inertia that sucks the soul out of your life.

While joint pain is listed as a potential symptom of adrenal crisis, I have only ever had serious pain with steroid withdrawal.

As long as I don't have the stomach/back/flank pain AND low blood pressure, I figure I'm okay. When those two pop up together, I get worried.

So that is the difference between steroid withdrawal and an adrenal crisis.

Any questions?

In March after being in the hospital for asthma, I immediately had steroid withdrawal symptoms once I started an alternate day taper. I actually ended up in the ER because, while I knew all about suppression, I was not yet familiar with steroid withdrawal. I thought I was suppressed (which I was but it wasn't possible to know that yet unless someone ran the right tests, which no one did) when actually I had withdrawal symptoms.

Things later crossed the line into potential adrenal crisis when the back pain started. It felt like someone was holding a blowtorch to my kidneys. The heat in my body was intense, unlike anything I have ever experienced.

If I had not found a half way intelligent endocrinologist, there is no doubt in my mind that I would've had a true, life threatening adrenal crisis.

The really confusing thing about adrenal suppression (a.k.a. Secondary Adrenal Insufficiency) is that you get to experience steroid withdrawal mixed with the potential of an adrenal crisis. As you stress dose and then taper, you're (potentially) going to go through withdrawal again and again. Which is stressful, which can tax your adrenals triggering crisis like symptoms. It is a vicious and unpleasant cycle.

Most people are, allegedly, not suppressed that long. The medical literature believes that Secondary Adrenal Insufficiency caused by steroids only lasts a month or so. This is utter bullsh*t in my experience. I have had this three times and each time it has been a journey of about a year to get full adrenal function back and then 1 to 2 years after that to fully recover.

It has never been as easy as the medical textbooks make it out to be.

Related Posts:

Can Corticosteroids Cause Your Adrenals to Crash or an Acute Adrenal Crisis?

Under Pressure

Self Care for Steroid Withdrawal and Adrenal Suppression

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