Tuesday, December 27, 2011

Steroid Woes

As many of you know, I am adrenally insufficient - my adrenal glands do not make the small amounts of steroids that are necessary for life.

The steroids your adrenal glands normally make keep your body functioning - they control your heart beat, blood pressure, blood sugar, response to stress, etc. When you take large amounts of steroid medication (like I did for my ulcerative colitis), your brain quits telling your adrenal glands to make steroids because it would be superfluous. Usually, your brain and adrenals wake up after you taper off the medication... but mine did not. This means that, in order to perform vital functions (like, you know, maintaining a good blood pressure) my body depends on the steroid pills I take three times a day.

Be Alert. The world needs more lerts. 
We discovered I was adrenally insufficient when I was trying to taper off steroids after my surgery in 2009. I got so sick - I was basically having adrenal crisis after adrenal crisis. My muscles were so weak I could barely walk, my whole body shook, I was dizzy, sweating, hurting, nauseated, and non-functional. I had to get a liter or two of IV fluids every other day, and even with this, I was so incredibly sick. After a very scary episode in February 2010 where I went completely unresponsive while getting IV fluids, they upped my prednisone to 40 mg and added in another steroid (florinef) to get me stabilized. This was a very extreme move to put me back on a high dose of prednisone, but the endocrinologist I was seeing didn't know what else to do (and apparently didn't know what he was doing... but that's another story).

Here's a Sciencey picture. This is hydrocortisone.
It's helpful if you speak Organic Chemistry.
In April 2010, I saw a new endocrinologist. After changing to a faster acting steroid, hydrocortisone, 3x/day, things began to settle down, although I was still on about 3 times the amount of steroids that a normal person my size should need (yet I had no symptoms of having too much steroids). I continued to have adrenal crisis episodes here and there, some of them requiring a trip to the ER to get rehydrated and back on track. My issues were very difficult to control or predict, which was incredibly frustrating for everyone involved. With my tummy, we never can tell how much of my pills I absorb from day to day (or even from hour to hour), which results in very inexact blood levels of steroids. With help from meds to slow down my tummy when it's acting up, and permission from my doctor to double up on steroids anytime I suspect I'm not absorbing or that I'm starting to have an adrenal crisis, we finally reached a much more stable place with my adrenal stuff.

This, my friends, I am not.
This spring, I was able to taper down a bit more after my third surgery. I now take an average amount of steroids for my size. Now it just remains to be seen if I can get off steroids altogether. A few weeks ago, I began an attempt at tapering on the steroids again. I took a bit less steroid every two days. Each day, I felt a bit worse, culminating on the Sunday morning before Christmas when I totally crashed - dizzy, shaky, etc - and decided that the taper wasn't working. So I went back to my normal dose. Then I got a cold. I ended up completely crashing on Tuesday and Wednesday, feeling just awful. Finally, on Wednesday before Christmas, I realized that I probably needed some extra steroids. I took some, and felt like a new woman within 45 minutes. Note to self: I need to take extra roids when I get sick. Your body normally makes extra steroids to cope with the stress of being sick. Since my body doesn't make steroids at all, I have to take extra roids when I have surgery or even dental work done. You're not supposed to have to take extra 'roids for just a minor cold, but apparently my body plays by its own rules, as we all well know. ;)

Unfortunately, since then, I have continued to struggle with off and on shaking, dizziness, fatigue, feeling like my heart is pounding, etc. My arthritis has been flaring and my knees resemble large citrus fruits at times. ;) As sometimes happens when I flare, my eyes are super dry and irritated, so I just pour eyedrops in my eyes and can't wear my contacts. This truly causes me great mental anguish because then I'm doomed to wearing my dorky glasses and no make-up, which is just socially devastating. ;P

I'm also having a "pain flare" with my muscle pain, too, and nothing is really helping the pain. It's so weird because I'll have some good hours where I feel fine and do normal stuff, then all of a sudden, I'm hurting really bad and can't stop shaking and just curl up in a little ball. Now I'm dumping off and on, too, which really isn't helping matters! I am not sure what is going on, but it's annoying! ;) Hehe. Need to tell my body to settle down! Seems like I had a similar pain flare last December/January, so maybe I'm allergic to winter? May it never be!

Hannah ;)

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