Prednisone vs. Hydrocortisone for Adrenal Suppression: Pros, Cons, and Tips

One of the things that always puzzled me as I read through medical journals and textbooks was one would say to use Prednisone while another would say to use Hydrocortisone for adrenal suppression. These were always one-off sentences, almost throwaways and there was never any elaboration on the why of it. Nor a comparison/contrast of one steroid over the other.

I think I know the why part of it. Maybe.

It's a half life thing.

Prednisone sits and sits and sits in your system. If memory serves, the endo calculated a half life of slightly over 24 hours.

So if you take Prednisone every morning, there is never a time where you are without and this can work against HPA axis recovery.

Hydrocortisone, on the other hand, has a half life of 12ish hours. So you have at least half a day without any steroids in your system, time in which your brain is supposed to go 'oh sh*t, we need steroids STAT' and trigger natural steroid production. The 'oh sh*t' moments help the HPA axis recover functionality.

Now, when I was very first diagnosed as being suppressed, my am cortisol was 1.3 and Prednisone was used to treat it. I am torn on whether or not this was a good thing. At a level of 1, your body needs some help--a cortisol of 1 is not really compatible with life--and it's probably not a great idea to have a short half life steroid, at least not initially.

However, I don't think we needed to use Prednisone the entire year and I wonder how that prolonged the recovery. Also, I ended up with a pretty bad case of exogenous Cushings from the treatment, which tells me the docs weren't doing the greatest job of calculating my dose.

And this was with regular ACTH challenges. So they had data. I don't know what they were thinking. If I'm in the mood for masochism, I'll find some old pictures and show how bloated my moon face was back then. I even had a hump! I might have benefited from switching to Hydrocortisone during that episode.

Of course switching from Prednisone to Hydrocortisone this time was not easy either. It took me a very long time to adjust. So long the endo even said 'Wow, that's a long time' when I told him that I didn't adjust until February.

The pain. Oh God. The pain.

It was enough to make me fantasize about narcotics. Or drinking. Or narcotics and drinking together.

I don't drink.

I hate narcotics.

But I thought about them, very fondly, from December through February.

What I ended up doing was splitting the dose even though the endo told me not to. I came clean last week and told them I did it anyway in the hopes of helping other patients down the line. It made life livable and it did not impede recovery as far as I could tell. (And the endo doesn't seem to hate me for being such a rebel, I was clear the situation was intolerable without split dosing.)

Knowing that the goal was to be without steroids in my system as much as possible, I did the split doses all before noon. To be clear, I didn't change my total dose, just split it in two.

I took the first dose in the morning when I got up (usually between 7 and 9am) and then the second dose between 10 and 11am. This made it so that the excruciating muscle pain did not hit until after I had finished my evening job and put my toddler to bed.

At night, I used Tylenol pm or Advil pm or Benadryl to help me sleep through the pain.

Gradually, over time, I took the second dose earlier and earlier until it merged with my morning dose. That was the point where things seemed to improve. The pain faded. I began to exercise. Tapers started happening faster and faster.

Hydrocortisone has not caused severe Cushings like the Prednisone did, but we've also been working with much lower doses. My memory is a little foggy, but I seem to recall starting at 20mg of Prednisone last time and camping there for months, which is a lot.

Prednisone seems to be less painful, but also less effective than Hydrocortisone. Which is not ideal when you have the lazy stubborn azzhole HPA axis I do.

Rising Above

It may be premature yet to say this, but I feel like the taper to 20mg of Hydrocortisone (which is the equivalent of 4 mg of prednisone) is a success.

Here's what I did today; grocery store, pharmacy, craft store, made cookies, did a Valentine's craft and will be making dinner.

I've also maintained some semblance of an exercise routine throughout the taper, which is huge (although a good bit of that was me saying F*ck You to the fatigue, adrenal and muscle pain and exercising anyway).

Nor have I been sleeping much as the toddler has been up at night having problems breathing.

Those of you who have been reading a while can understand how good this is. To do all this and not crash is monumental. I am pleased.

On top of that, as of today I am condensing the pills, no more split dosing. We'll see how that goes over.

The eerie thing is that this taper has gone well just like the taper from 5mg to 4mg of prednisone. Odd that this would be consistent. 4 to 3mg of prednisone marked the beginning of the end last time, will it be the same this time around???

I won't find out for a couple of months. The plan is to just park at 20mg of HC until March. Of course I say that now, knowing full well I will start to get impatient sooner as opposed to later. But the smart thing would be to wait, here's hoping I'm as smart as I think I am.

With the HC's shorter half life and the fact that I'm now at a sub-physiologic dose, between the two, this will hopefully give my HPA axis ample time to recover fully.

On the toddler reading front, if anyone cares, I'm just reading the Usborne Phonics Books and asking her to read the words she knows/introducing her to new ones. This approach seems to be working well and the books also have whimsical plots that hold her interest.

Down to 4 & Toddler Preoccupations

I am trying to go full time with 4 pills of hydrocortisone starting today. It's about as much fun as you would expect.

I like the comment on the previous post from Bad Turns talking about doctor visits as a one off.

I DO feel like my care is a series of bad one-night stands, where there's no history factored in at all to our encounters. No one remembers what came before or even what they said. Worse they contradict themselves, then deny they do so and then dismiss me because to acknowledge what I'm saying would be to admit they aren't paying attention.

It's a perverse dementia where every time they see me, it's the very first time.

I am the only one providing continuity of care.

That is so so wrong.

So the practice of modern medicine sucks. Anything else new?

Why yes. Glad you asked.

The toddler is after to me to teach her how to read. She's 3. She has the foundation to read (knows her letters and phonics and has been reading some words since the age of 2) but I have no idea how to teach her how to read. I just taught myself.

And she can be a bit of a perfectionist and tantrums when she can't do things exactly right. Meaning she's a prickly pear.

I'm a little lost here.

Of course, I'm delighted. I love nothing more than to read and to raise a fellow bibliophile is a dream come true. I just don't know what I'm doing. I've been waiting for this moment, when she would combine her knowledge of phonics with a driving need to read, I just thought she would figure it out on her own.

She also fell down the stairs again. Just a couple steps. No blood. But sheesh. Stop already.

The physical therapist is bumping her up to bi-weekly and we may go weekly for a while. My frustration is, if she's not in therapy (and we had missed some sessions due to the holidays and illness) she regresses. So I feel like we're doomed to forever be in therapy which is super expensive and not yielding permanent results.

The whole thing is so frustrating.

This Is Your Brain on Steroids

I am tapering down to 4 pills which is roughly 4mg equivalent of Prednisone or 20 mg of Hydrocortisone.

This is a sub-physiologic dose!!!

I am taking it slow. Trying alternate day between the new lower dose and the old higher dose. Hoping that is effective at gently easing my brain into the new dose.

Which I need because, yesterday? My brain did not work. At all.

Went to the mall with a friend and my brain decided that Floor 3 meant we had to go down to the basement level instead of up to the actual third floor.

I took me about 2 minutes to realize my mistake.

Why yes, I do drive a vehicle with that cognition. Defensive driving, it's not just because of the drunks people. Also, those people driving slow in one lane? Might just be trying not to kill anyone so stop honking.

Further, I hope to go back to work with this brain. I'm sure my work performance will be stellar! Right? RIGHT?

Embarrassed, I explained to my friend that I was tapering steroids and therefore was not in full possession of all my synapses. Fortunately, they have known me for a looong time and it was no big deal.

But gah.

My brain is a moron.

On the klutz front, I have lost all the skin on my toe (and I mean ALL of it) from the blister which is minor, but majorly annoying. As I had plans to like, you know, use my leg in the near future. The ankle, is ostensibly the worst injury but it's just bruising, not sprain or strain so it's functional. Nor does it rub like the toe, which aggravates the whole thing.

Lacking Clarity

Okay, my brain is working at the moment. Although we are not going to dwell on how long it took me to remember what month it was just a few minutes ago. Yikes. Old age and steroids are not a good combination.

I was able to verify the test results with the endo today.

Baseline Cortisol: 13

30 Min Cortisol: Drawn too late to matter so it's not relevant.

60 Min Cortisol: 20.6

Now, there are about a million ways to interpret these results.

The endo I am seeing is being very conservative, almost rigidly so with this idea that I'm fine.

Some medical literature, well respected and well researched literature, would classify me as borderline and recommend further testing.

Other medical literature says I failed the test and need more testing to determine if I'm primary or secondary.

And even other medical literature would ask why the hell we are testing anything since the test results are invalid so long as I'm on any amount of steroid.

Adrenal Insufficiency (AI) patients (the real experts!) fall into three camps: I flat out failed the test OR the test is null because the timing was off and the test was so stressful OR it was not relevant unless I used another steroid for a few weeks before the test, one that doesn't affect the test like Hydrocortisone or Prednisone.

Endo #2, by the way, felt testing was pointless while on steroids.

Endo #3 feels that anything with a final value over 18 or 20 is fine, even though it was supposed to double to 26 and did not. The baseline of 13 is either low per medical literature or suspect, it is not actually as good as I had initially thought.

So pick your perspective. There's a study/data to support nothing being wrong, a borderline case of adrenal insufficiency (AI) or full blown AI.

What do I think?

Well, I am pleasantly surprised by the 13 baseline. Remember, I've had baselines of 1.9 and 5 so this is not without hope for me. So even though 13 is not great by medical standards, I'm actually pleased. Like I said in the previous post, I am hoping hoping hoping that I'm coming back from the abyss.

The thing is I don't know anything for sure and it is awfully hard to suffer through this muscle pain and not know if it's doing me any good.

Ergo, I would like another Cosyntropin Challenge when I get to a sub-physiologic steroid dose just to be sure. Because we really haven't established if adrenal function is recoverable or not and the fact that I had weaned and then couldn't live without steroids all of a sudden is kind of disturbing.

Although apparently I am the only one who is disturbed.

Endo #3 flatly refused to order another challenge test today. Instead what is happening is all my symptoms are being farmed out to other specialties as if nothing is related or derivative. As if my body is spontaneously having disparate unrelated problems.

I'm now scheduled for a tilt table test because that is apparently the key to understanding my bizarro blood pressure. Only I don't expect much because my blood pressure isn't wonky on a consistent basis, not enough so to perform properly for a medical test. I fully anticipate that test to show nothing.

Also the test appears to be used with fibromyalgia and chronic fatigue patients; throwaway diagnoses that garner even less respect and care than adrenal issues. NOT the direction I want to go! I am not running for the worst diagnosis to get medical care for prize.

As for the rheumatologist (sp?), I am holding off on that as I think the muscle pain will fade soon. It was triggered by the challenge test and I exacerbated it by splitting the steroid dose and also decreasing it by 5mg. Why I wondered why I hurt so bad, I don't understand. You would think I've never done this before.

I mean I knew it was steroid induced but it didn't occur to me until just now to wait it out and just reiterate with the endo that it's from the steroids. If it goes away, it's not a problem, right?

My hope is by the time I get down to 20mg of Hydrocortisone (which is sub-physiologic) that I can call the endo and basically throw myself at their feet and beg like a puppy for another challenge test. Given that the science is so wishy-washy on my results, it seems only logical to gather more data to see if a definitive conclusion can be reached.

I have been told not to stress dose. That if I have low bp, bilateral back pain, nausea etc... that it's not adrenal (that is kind of a dangerous statement, but ooooookay). That I am on enough steroids that I can't have a crisis (that is patently not true).

So as professional as endo 3 has been, I really haven't achieved much. I continue to feel like I'm the only one who ever has a clue and wonder why it is that patients are the only ones who seem to ever read the medical literature.

More of the Same

I heard back from the endo on the ACTH challenge. Apparently I'm fiiiiiine.

Huh.

Let's hope it's the case that the HC wearing off and leaving me hanging (painfully so) for half the day is finally prompting my brain to do its job.

I've sent a request for my medical records so I can verify the actual test results. I managed to finagle the numbers out of a nurse, but can't rule out the possibility that they gave me wrong info.

If what the nurse told me is right, well yeah I am making some cortisol*, but the values didn't double and weren't high enough in total to rule out Secondary Adrenal Insufficiency.

Also, if the nurse is right, the endo maybe misread my results. So, yeah, I need my medical records.

Best case scenario, this test shows some recovery going on.

But I bet I will need another challenge for comparison to know that for sure.

I also bet the endo will not be happy that I want another test.

I am so tired of doctors. Over it.

The endo did not give me a taper schedule and actually gave no instructions at all. So I am over here playing around with things. Again. I'm experimenting with my dose because...

The muscle cramps are awful. They have been awful. All those times I mentioned that they were improving? Were when I had high levels of hydrocortisone in my system which minimized the cramps. Come 3 or 4pm, I feel like I'm being squeezed by a python.

It is incredibly painful and debilitating. It lasts for about 5 hours and then slowly improves (possibly a sign that my brain is realizing it needs to do something????).

The endo thinks I should see a rheumatologist (sp?) and is not connecting the pain to the steroids wearing off. Nor do they care. They are suffering from 'all your results are normal by my standards so you are fine and should go away now' syndrome.

Have I mentioned that I am SO Over It?

The endo also doesn't want me to split dose because then I will have too much HC in my system and not enough time with it out of my system.

While I respect and understand that position, it is not going to work for me. So I've been experimenting, trying to push back the muscle pain until 8pm or so. Most adrenal insufficiency patients do a morning and mid to late afternoon split dose. I don't need to do such a late second dose, I can do it around noon, which means I still have time with no HC in my system.

Unfortunately, that means the pain and muscle spasms hit right when I want to sleep. That's not going to work either.

Today I'm trying to delay the steroids as long as I can in an effort to push back the cramps. We'll see how that goes. As it stands right now, my brain is kind of not working well. If this post makes zero sense, that's why. Not enough steroids.

And I need to call the endo and point out that they really never gave me a game plan.


*See also how estrogen birth control pills and PCOS estrogen dominance can inflate cortisol. Which is a good thing for me I think. Some AI patients report baseline cortisol levels as high as 16 while on the pill. I was not that high, but it was respectable (I'm holding off on sharing values until I can confirm them).

By the way did you know that progesterone is a precursor of cortisol and that I don't really make any? Interesting, no? This is all so much more complex than one blood test.

Peace and Randomness

I feel better. I guess I just had to give in to the emo drama. Once I did, I gained some insight that allowed the emotion to dissipate.

It was not a happy insight, but apparently it was something my subconscious really wanted me to know.

I don't know if I was compartmentalizing too tightly or what, but it's behind me. For now.

Aside from the impact of my new super emo-ness, yesterday was the best day yet on the Hydrocortisone. No headache. BP didn't spike. The wall didn't bitch slap me. However, I did have some back pain and stomach pain as well as fatigue seemingly related to my drama-rama.

The muscle cramps are also intense once the HC wears off. I had a moment of concern the night before when just breathing set off all sorts of conflicting muscle spasms throughout the abdominal wall. Reminded me of Metformin's side effects, where everything contracted at the same time--try walking when that happens and see how it goes. It doesn't! So to have my stomach lock up from breathing made me a bit nervous.

It's not something I know how to fix anymore. I've stopped taking vitamins, even though that doesn't prevent the muscle cramps. I have no idea if I'm high or low in magnesium, potassium, calcium etc... and am afraid of making any imbalances worse. So I don't do anything except hope it passes and that the blood work comes back showing something that can be fixed.

Here's hoping.

Cortisol at Christmas Time

So the aftermath of the ACTH challenge has been...

1. Muscle cramps

2. Flank/back pain

3.Fatigue

4.Shortness of breath

5.Loss of appetite

6.Mild drop in BP

7.Major headache

I didn't get the Hydrocortisone into my system until after noon which probably explains it. The challenge only administers 1mg of cortisol, which is not enough.

The cramps could just be from the switch back to HC from prednisone--my muscles are pretty cranky. My stomach feels like I've done a billion sit ups.

I wonder if this is why the IV/blood draw attempts were so painful? My hand actually throbs just from holding things due to the massive bruising. The pain seems excessive to me and I'm irritated with myself about how whiny I am about it.

But it huuuurts.

Wah. Wah.

I was over myself about 5 hours ago, you?

Family starts arriving tonight. I hope to make sugar cookies among other things and have the neighbor kids over for an Xmas pizza play date. We wrapped the presents last night. All done with shopping both for presents and holiday food. The house is kind of clean if you don't look at anything too closely.

Onward.

Real Quick

Still hanging in there.

Right now the struggle is staying positive in the midst of a sea of negativity.

Did well yesterday on the Hydrocortisone. Hit the wall right around the time I had to go to work.

Murphy's Law of Chronic Illness: You will only feel good when you don't need to.

Oh the wall hurt. BP spiked. Major head ache. Wanted to lay down and never get up.

Today is so far so good, but it's not time to go work now is it?

In real big news, the toddler ate broccoli coleslaw TWICE. Yes, she ate vegetables. Call CNN and People Magazine. Toddler eats vegetables and...

ASKS for more.

World Peace is next!

On a Wing and a Prayer

Hydrocortisone is going okay. Surprisingly okay. As in I ran all over the house chasing the toddler who thought it was the best. thing. ever.

I have not done that in way too long. This morning I am able to be the parent I want to be.

But I'm only a couple hours into the day so...

I tried to articulate to the endo how I thought two days of prednisone might help my body make the switch. Not sure if I stated it well, but here's hoping the break got me over the transition hump. Sometimes it seems if you take 2 steps back then you can take 15 forward.

Sleep would be nice. I go to bed early and can't sleep. When I do sleep my gut wakes me up at 4am pretty regularly--I am still having pain and, in the wee hours of the morning when it has me squirming, I swear I'm gonna call the doc first thing, but then the worst of it passes and I don't call.

I really need to squeeze in a GI doc, sooner as opposed to later. But I put it off and put it off because I just don't need anything else to do. At least I don't need an alarm clock.

As for the rest of the mess I'm dealing with, I'm working on my resume, contacting my references and hoping I can do this. The timing is for poop, but I'm not applying for everything and anything, there just happens to be one job for my skill set open. So I have to apply now as opposed to taking more time to deal with my stupid health.

The dearth of positions in my field, even in a good economy, makes the odds of me having to report to a job as of Jan 1 pretty low. On the other hand, I'm in a niche field where it's hard to find good people, which usually tips the odds in my favor. We'll see what happens and hope I can pull myself together to make it all work.

Won't know until I try.

Prednisone Hydrocortisone Flip Flop Flim Flam

The endo called and is perplexed that the HC is causing problems.

All I can say is I had one AI patient warn me that HC threw them into a crisis and landed them in the hospital.

They take prednisone now.

Adrenal stuff is the weird shiznit.

Or maybe it was just the BP meds. Maybe my high blood pressure has just gone back to normal. Which is also weirdness of the yo-yo variety.

Regardless of the weirdness, we agreed for the weekend I'm doing prednisone and then I'll go back to Hydrocortisone on Monday. If it doesn't go well, I call back.

Just so we don't have to worry about me totally crashing over the weekend.

Which is a blessing as I am volunteering at the preschool's allegedly 'free' breakfast with Santa Claus (since when did free mean I have to provide $20 worth of food?) and going directly out-of-town for the extended family Christmas/ Grandpa's 80th birthday party on Saturday. It is a go go go day.

Not a good time to be struggling and not the kind of thing I can survive without some steroid support.

Home Alone with Pickle Juice

I am way bloated and showing some signs of Cushings, namely red stretch marks on my stomach.

WTF?

So I thought, well let me see if I can do 20mg of HG instead of 25mg.

That went over like a bug hitting the windshield of a supersonic train. In fact, I'm writing this post primarily to keep myself awake.

I don't know what to think. You can feel like a dead sloth with too much steroid and too little steroid, so maybe I'll give it another day and see if I adjust for the better before bumping back up.

At least my gut finally seems to be healing. I was able to sleep on my side without pain for a few minutes this morning.

Oh crap, just realized my blood pressure is way low. Hubby is at school. Toddler is running amuck and I am now drinking pickle juice.

And texting hubby that he might have to come home instead of finish his class and go play hockey like he planned.

Oh crap oh crap oh crap.

The Cure for Everything

So a few days ago, when I was so so so low, the toddler came over to me and climbed into my lap saying "Momma, I want to give you a hug and give you some love."

Now, if that is not a cure for all that ails a person, I don't know what is. I immediately felt better.

The dance recital was fun and funny. My old, shoddy camera couldn't get enough light for a good picture of the performance, but I caught a few candids of my girl busting a move before the show.


Reminds me of modern dance from the 60s. Very funky. I love it. She has great musicality even if she doesn't know how to plie or point her toes yet. By the way, the required costume was PJs if you were wondering about the outfit; it's PJs with a dance skirt.

Then we came home and I threw some cookies in the oven to properly commemorate the occasion. We read Christmas stories and then snuggled in our big bed watching a Christmas cartoon before packing her off to her bed.

It was nice.

I think I'm adjusting to the HC. I'm not 100% but I'm not too bad off either. Sometimes I feel perfect, other times I want to stop, drop and nap. The headaches aren't for the faint of heart either. Hopefully with time I can hit 100% like I did right before I switched from the prednisone. For now, I guess I just lay back and enjoy the extra sleep. Nothing I can do but accept it, right?

As you maybe can tell, I've been working on my game face.

Just yesterday was the Preschool holiday program. Which was fun. The toddler had a good time. Which is a polite way of saying she was allowed to eat unlimited amounts of sugar. Ugh. Mommy paid for that later.

She wore her skirt and got lots of compliments (even though it's too big as not only can I not sew, I can't measure waists either). I had a tough time getting a decent pic, the candy cane gangsta shot below was the best I could do, it's just been a rough couple of days for pictures.

And yes that's candy cane red smeared on her face. No, I don't know what happened to her legs. Apparently they are detachable?



Tonight we did more Xmas shopping. I did NOT feel up for it at all, which is why we went as a family. Didn't think I could handle driving and shopping. Pathetic I know, but this is my life. Luckily, the toddler was super super mellow and copacetic, killing us with the cute.

So coasting on her chill mood, we cruised the Christmas lights while listening to Christmas music. She loved it, every single light bulb was admired. Hubby and I got a huge kick of the people with skulls and scarecrows still on the lawn. One house owned just one single solitary strand of lights and they put them up anyway.

They looked lonely.

People are funny.

The World Will End on December 30th, No Wait Make that January 3rd

To review, I missed cortisol test opportunity #1 because the pulmo told me to wait two weeks at the time, which I could not do and I didn't argue the point.

Because I was too out of it to argue.

Then the pulmo gave me attitude in Nov saying they ordered the test and I didn't show up.

And I was like, nuh-uh, you told me wait two weeks and I couldn't wait that long.

Then the endo at the time didn't require a test as they were comfortable meshing my history, my symptoms and the sequence of events around them.

Plus I was too far gone to wait another day, in my humble opinion.

Now the new endo ordered a cortisol challenge test. The secretary tried to call me but the call didn't go to voicemail.

So they couldn't leave a message, but went ahead and set me up for a cortisol test yesterday and never tried to call me back to tell me about it.

Since I am not telepathic, I missed that test.

(I hope they don't bill for that. It wasn't my fault.)

Now I have to wait until 12/30 because they are completely booked to infinity and beyond.

No wait, they screwed up. Again. Now I will have the blood test on January 3rd which is SO awesome because it will be completely self-pay.

Clearly the world will end on that date because there is no way I am ever going to get a cortisol test. Or be able to afford one by the time they do get their act together.

Congratulations health care in America, you've made me cry.

I left a message with the secretary begging for them to see if they can do anything this month still. Anything.

As for the hydrocortisone, the 20mg is not so hot. The fatigue is excising options like going grocery shopping, exercising, driving competently, staying conscious and eating. So I have called to get the dose adjusted.

At least I didn't waste the snow day yesterday. The hubby took the day off to go to the parent-teacher conference, which was canceled due to weather, so I had him drive us to various stores because he grew up in E. Europe where hairpin mountain curves are never plowed*. He likes near death driving experiences in the winter. Also, his adrenal glands work.

I got a lot of Christmas shopping done so that was a positive. Even if I did take a nap on the hubby's shoulder while the toddler played at the mall playground.

*They don't mow the cemeteries either unless someone dies. Communism didn't do a lot of infrastructure maintenance.

A List & Day One

1. The hydrocortisone dose is 20mg.

2.I am no longer taking Singulair. There never seemed to be a good time to mention that, it never fit the narrative I had going at the time. It's now back to being an 'as needed' medication.

Only took 9 months!

3.Slowly realizing I have more problems with muscle cramps/pain than I have allowed myself to feel. To where I almost denied having them to then endo. Almost.

There are things I just ignore. I have almost daily neck pain. My gut is still painful from the cranberry acid. These are not things I dwell on, except maybe here on the blog. I am used to ignoring muscle spasms/cramps unless they are really bad because I've had them for years.

Luckily the toddler used me as a jungle gym the other day and the pressure of her hands on my legs was enough to make me yelp. I actually didn't realize I was in so much pain, it was kind of latent. Because of the toddler, I fessed up to the endo.

It doesn't help that I always like to blame the muscle stuff on steroid withdrawal. As in, now that I've gone back to 5mg, I feel good, but my muscles are all up in arms and very pissed off about it.

4.I am now taking Liosinopril daily. I don't get it and am confused. When did I switch from having high blood pressure that didn't respond to medication, to not needing medication at all, to suddenly using one medication for high blood pressure that seems to be working?????

Or has my body now decided to do it by the book and ramp up the BP with the prednisone?????

And how will the hydrocortisone affect that? It has more mineralcorticoid activity than prednisone meaning, from what I understand, it will influence blood pressure quite a bit more, but I don't know which way things will swing.

5.Bumping up to 10mg on Friday was fantastic. It worked really well and seems to have help flip the switch so that 5mg now is feeling pretty good. I think I underdosed whatever that episode was prior to Thanksgiving which is why I was dragging for so long. A one time booster dose worked wonders.

So today is day 1 of Hydrocortisone (HC), I hope it goes well. We also have a blizzard warning and I will be so bummed if pre-school closes. Parent-teacher conferences are today and I have been waiting since August to hear what's really been going on at p-school all these months.

I would call off my tutoring tonight, between the storm and the HC, but the last time I tried to call the family, I couldn't get through to anyone.

Truth

I am holding steady at 3mg the same way a rock climber hangs by one hand after their ropes have split and the edge of the cliff looms large.

We'll see if I can pull this one off or not.

And for future reference, when your toddler tells you they are eating your soup, don't get too excited.

They are not eating your soup.

They are feeding it to the dog.

Along with a stick of butter.

So doing the happy dance in the other room because she's eating soup packed with vegetables is kind of irresponsible parenting.

Three year olds are a danger to themselves and others. They know just enough to get the lid off the probiotics supplement container, but not enough to realize eating them all may result in unpleasantly sh*tting their brains out later.

Your husband will not know what to do and when he calls you at work to ask, you will tell him it's probably fine, but call Poison Control just to be sure. And he will ignore you because why no one will ever know, however, your banshee shrieking upon uncovering this oversight will certainly ensure he doesn't do that again. Or so you hope.

True story.

Parenting: The only job you'll ever love with all your heart and never be good enough for. The performance reviews are bruuuutal.

True story.

Okay. Moving on. Let's answer some questions from yesterday's post.

Ezekiel asked: "If, hypothetically, your cortisol production doesn't wake up again is there an alternative to pred?"

Yes, but I don't know what the doctors would actually end up prescribing. But yes there are other steroid meds, some are considered better than prednisone. More detail on this when I answer the next few questions.

Anonymous wrote: "I think you're trying to taper too fast. I know most docs say to drop every two weeks, but for some of us it appears we are much, much more sensitive to the drops and the side effects of tapering make it soooooo hard to get through the days. I really think you need to stay at each dose longer and also go down by smaller amounts than 1 mg. Also, I've read that if you use your rescue inhaler more than twice a week, your asthma is not well controlled. "

You know, all the pulmonologists and endos I've seen all subscribe to the 5 day taper paradigm. I have heard of longer tapers, which is what inspired me to stick at 3mg for two weeks, but no actual medical professional has ever advised this.

As for the asthma, eh. It's annoying and unpleasant, but not impressive. I've seen worse. I'm not too worried about it. Once I get my adrenal glands going again, I will be willing to add in more asthma meds like Pulmicort, but I really don't want to muddy the waters with more steroids. They say the inhaled steroids don't have the side effects of the oral ones and true, it's not as bad, but I still react to them.

Yes, I am a special snow flake.

You may all applause. Delicately though, I am sensitive.

Edited to clarify: The asthma is the same no matter what I do. The amount of breakthrough symptoms and use of rescue inhaler has been steady so what's the point of more meds? I've done it both ways, there's no difference.

Tracy wrote: "Mayo's endos in Minnesota do adrenals just fine in person - we've seen them for secondary adrenal suppression among other things. In fact, Mayo has one of (if not the) top experts in the world in adrenal tumors.Why aren't they using hydrocortisone instead of prednisone? "

Either I am mis-remembering the info on Mayo or was actually on some other medical system website or didn't see the info you found. Or you got lucky (pass some of that luck over would ya?). The fatigue does kind of eat my memory similar to new parent sleep deprivation.

From what I have read, the steroid used for Secondary Adrenal Suppression varies. It can be either HC or prednisone. Several pieces of medical literature I've read prefer prednisone over HC for SAI but no one ever says why, which is kind of odd since HC is supposedly superior.

Badturns wrote:I'm certainly not pushing the Mayo Clinic because I have no experience there, but I went to their endocrine site and looked at the doctor's profiles http://www.mayoclinic.org/endocrinology-rst/doctors.html There are some with adrenal function/dysfunction listed under "interests" and in their list of publications. E.g., this guy: http://www.mayoclinic.org/bio/10024956.html

Yeah, my memory of what I saw or didn't see where may be flawed or I may have missed something.

However, I will say I'm wary of 'pituitary centers' which is where some of the endos who do adrenals end up. Cushings patients often report cold abuse and lack of care when they seek help from those specialty centers--these are people who actually do have tumors on the pituitary and the pituitary centers are refusing to test! They get their diagnosis from a 'not pituitary center.' It's that f*cked up. Not saying it would happen to me, but, given my record thus far, I am really good at finding doctors who could give a sh*t.

Honestly, I feel awful for endocrine patients. The stories I read online are heartbreaking. People are ignored, belittled and mistreated...by the uber specialists, the doctors who are supposed to be the endgame of medical perfection. It's horrific. Believe it or not, I am nowhere near as bad off as some people. There are people out there who have proven tumors on their pituitary and the doctors still don't care. Isn't that crazy? Shame on those doctors.

Run2WinthePrize posted a comment on the Methacholine Challenge test and I just want to respond here too so she is sure to see my response.

1. MCT negatives have about a 10% error rate from what I remember so with all your symptoms I would definitely go to that other lab for another MCT to rule out operator error or equipment failure. A negative MCT is not 100% accurate and someone has to be that 10%, you know?

2.I hope you find an answer soon especially since you are so symptomatic.

And that's it. Did I miss anything?