Sunday, November 21, 2010

Now What?

Normally when I take 20mg and I'm not, like, sick with some kind of bug, I feel 'high' pretty quickly. Next thing you know, I'm writing 3,000 word blog posts. Four times a day. That is how lots of steroids hits me. Everyone can tell I'm getting more cortisol than I need.

At 20mg yesterday, I just wanted to go to bed. I still am not sure if I took enough but was/am afraid to take more.

I don't know what I'm doing.

I began to question when is this an emergency? When I have to take 40 50 mg? How much steroid do I take by myself?

Please don't let me end up in the ER. Please not that.

This was bad. I am still not sure if I've completely turned around. Still not sure I should've stopped at 20mg.

But so far, just sitting on my ass after about 8 hours of sleep, the adrenal pain is about 95% gone instead of just 60% yesterday. I don't feel so dog tired, but we'll see what happens this afternoon.

We missed the dinner dance. Went to a movie instead. I spent most of the movie wondering is this a good thing or a bad thing for the adrenals? Am I making it worse?

I didn't feel up to a movie but it was Date Night. Come hell or high water.

The toddler was at the grandparents for the night. That's not gonna happen again any time soon. You know how it is, wasting a babysitter is a sin when you are a parent. Even if you do feel like death warmed over. Under parenting laws, you actually have to die to get out of Date Night.

I am glad I went. The movie was good. It made the hubby happy and he lets me snuggle and sleep on his shoulder during movies. Something I realized I do anytime my adrenals are for sh*t. Deja vu of the last time I had Secondary Adrenal Insufficiency.

So the next big question is when do I wean down from 20mg? Tomorrow is a stressful doc appt that, if I'd been smart, I would've canceled and rescheduled when I had the chance.

The last thing I need is more stress and I don't know what is more stressful than sitting across from the doctor who hurt you when you needed help the most.

So I'm thinking at staying at 20mg through maybe Tues. Weaning down to 15mg on Wed, Thurs. Down to 10mg on Friday and down to 7mg next Sunday and 5 on Monday.

From there I am no longer trying to get off steroids. I tried, it's dangerous either because I'm not tapering correctly (because no doctor will tell me how to do it) or because my adrenal glands are not ever going to recover. But since 5mg can be a little too much for me and 4mg was the best dose (not too much, not too little) this last taper cycle I will try to get back there and camp until I find an endo who wants to do something about what's happening over here.


  1. Pretty good info on adrenal suppression here - it's talking about what to do for surgery (as surgery is a major stressor), but has good info.

    I've seen vague references to a stress dose being 3-4 times the regular daily amount. Probably not for major surgery, just regular stresses. But I am not a doctor, and I certainly wouldn't rely on this.

    Where is your primary doctor in all this? Why is he/she not helping? It doesn't take an endocrinologist to handle this.

    My family member had to be maintained on hydrocortisone (the equivalent of your 5mg pred), appropritely divided doses, for about 5 months, then tapered slowly off over 4 months. I think it's harder to get the adrenals to wake up with pred, than with hydrocortisone.

    In any case, some doctor should be helping you with this - I can't imagine they just give you unlimited prednisone to play with yourself - at least they certainly shouldn't be.


  2. Oh, I forgot to say before - before attempting the taper, they discontinued the steroids for 2 days, then tested morning cortisol. It was considered acceptable to begin the taper.

    If your blood pressure is crashing, I doubt that is the correct option for you at this time.

    5mg prednisone is a basic physiologic replacement dose - it replaces what your body would make normally, in times that aren't tremendously stressful.

    4mg would be enough to get by, probably not feel so well.

    Personally, I'd stay at 5mg until some doctor figured out to handle this properly. Again, I am not a doctor.



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