Insufficient

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My doctor is a smart man.

I knew this about him, but I was reminded of it this week.  When I called him with the symptoms I described in my last blog post, I really thought it was because my liver enzymes were elevated.  Last time they were elevated, I felt about like this.  But he knew what to look for.

The tests are back, and the answer is, in fact, adrenal insufficiency.  Both my cortisol and ACTH levels are in the basement, really alarmingly low.  While this can mean something more serious, like a pituitary tumor, the most likely explanation is prednisone overuse.  I’ve done three high tapers since December.  The sad part is, I am still flaring.  So I’ve been exhausting my adrenal and pituitary glands, and it’s not even working.

For right now, the answer seems to be to finish this most recent pred taper, then begin the process of getting off the stuff.  My doctor says that we will have to be very careful about my prednisone use from now on, and he will be monitoring the adrenal situation.  I’m not looking forward to the next several weeks (or, more likely, months).  I am already beyond exhausted, and getting off pred is never a picnic, even when there isn’t this sort of problem.  I know that I can expect a rough road ahead.  And even though I’ve always had a love/hate relationship with prednisone, and some part of me is delighted to put it behind me, it’s still scary wondering how I will cope with flares without it.

There’s also the bigger issue – why is my RA out of control right now?  I’m due for a Remicade infusion in a week and we are going to increase the dosage yet again.  If this doesn’t work, it may be time to say goodbye to this drug.  I am growing concerned that I’ve developed an immunity to it – it almost seems as if it was working better at lower doses.

But for the last week or so, it’s been all about the adrenals.  Yes, my RA is flaring and there’s pain, but the adrenal thing scared the heck out of me.  For a period of several days, I knew that my cortisol was low but was waiting on the ACTH.  All sorts of scary possibilities presented themselves, like Addison’s disease (which, thankfully, I do not have).  So I’ve been tense and exhausted and moody and impossible to live with.

Anyway, we’ll see where things go from here.  I’m seeing the doctor on Monday to talk about all of this.

Oh, and by the way, I wasn’t entirely wrong – my liver enzymes ARE elevated.  But they’re not as high as they were when I was suffering from symptoms last time, and they don’t seem to be responsible for this recent bout of exhaustion.  Still, something else to think about…

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7 Comments

  1. WarmSocks says:

    That sounds sooooo rough! :(
    I wish there were magic words to say that would make everything right again. sigh It’s good that your rheumy is on top of things and figured out the problem; I hope everything works out on Monday and you’re soon on your way to effective treatment. ((hugs))

  2. Cathy says:

    Going off predinsone is tough! I will be sending healing thoughts to you. Good thing you acted and got the blood tests going though, right? That sleeping cat makes me want to head back to bed. :) Sometimes we just have to listen to what RA is telling us.

  3. RA SB says:

    Red Dream –

    You sound a bit like me…as in, not responding to the current bilogics. Are you seeing a pain specialist yet? If not, ask for one on Monday. W/out her, I’d have no life left at this point. She is the only thing keeping me walking.

    Email me if you can, and let me know what he says!

    Thinking of you,
    RA SB

  4. Andrea says:

    Going off predinsone won’t be easy, but you will get through this. I do hope that you do find some drugs that do helps take away your flare ups from rheumatoid arthritis. You just have to push through this, and eventually you will find some relief. Keep smiling!

  5. Mahfer says:

    Whenever I don’t see posts from bloggers I enjoy rinaedg, I hope that means they are out living their lives fairly pain free. So, I felt sad rinaedg your post today and hearing that you are experiencing pain again. It is disappointing. I don’t think it matters how many times it happens or how much we mentally prepare for the next flare, it is always disappointing.Do hang on. One lesson we have all learned from RA is that no matter how bad it gets, we can always make it through the hard times and that it always eventually brings some relief back to us.I will be sending you extra healing thoughts. I hope you receive them soon as I know I will not be the only one.

  6. Vikrant says:

    All good thoughts and preyras are going out to you. I am so sorry to hear about the bad place you are in. I hope your new infusion will give you relief. RA is a very tough partner, but as expressed above, we all seem to get through somehow. Your site, and you of course are valuable, and I wish you the relief you deserve. Best, Greg

  7. RA Rich says:

    I read your blog today and I needed to I have had Ra about 8 years and none of the bilogics have worked for me. I have been on Remicaid for about a year and a half and the last infusion bottomed me out too far. I ended up in the hospital with stroke like symptom and a inner chest wall infection covering my whole upper chest, and a infected cyst in my chest the size of a golf ball They decided it was not a stroke, thought it was a silent migraine, then adrenal crash. My ACTH is less than 5 my cortisol is 0.3 and like you I am feeling like crap. MRI showed no Petuitary tumor but lit up something that did not show up with the stroke MRI spinal tap was normal but they are going to redo the MRI because of what ever lit up. My primary dr put me on prednisone for the adrenal insuficantcy then my entroconoligist took me off all steroids like you. I hope you are doing better by now, I am very down and needed to vent God Bless you!

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