Taper Log: This is a Deadly Game of Hot Potato and I’m the Dreaded Spud

Taper Log: This is a Deadly Game of Hot Potato and I’m the Dreaded Spud

A friendly reminder from my art journal.

(As always, please read my disclaimer concerning medical treatment/advice before you take anything I say to heart. I’m talking about myself and my health alone. Please and thanks.)

So I finally went to my long-awaited endocrinology appointment and heard exactly what I expected concerning my prednisone– my adrenals are in a coma is not atrophied, and if they’ll wake at all, it’ll take years. So what does this mean in layman’s terms? (takes a deep, shaky breath) More than likely, prednisone and I are best of buds for the rest of my life. Wait. What? But can’t you just taper like a normal person, I mean…

Let me recap in bullet list form:

  • I’ve been on prednisone consistently, sometimes up to 30 mg a day, since 2003
  • I have weaned myself to a 9/ 8.5 rotation and have been unable to go lower
  • No one ever, not once, mentioned the need for me to taper off prednisone until 2015 and then it was far, far too late. The damage was done. (long term prednisone destroys your adrenal glands, more on this HERE – Note: secondary adrenal insufficiency from chronic prednisone usage is sometimes called tertiary adrenal insufficiency)

I’ll leave the list at this point in favor of the potato in the blog post title. First off, I’m not untouchable. I’ve done nothing wrong. (repeats to self ad nauseam) The monsters are those, namely the specialists, who prescribed prednisone to me for nearly two decades but are now refusing to prescribe it to me when not having it can KILL ME. Prednisone now replaces a vital body hormone, cortisol, because my body thinks it no longer needs to produce it. You need cortisol to, you know, live… And I like living.

No one wants to prescribe the medication that keeps me alive.

No one.

My primary care is doing so only on a temporary basis.

My primary care does not understand this part of my treatment (it’s not their specialty – no blame there.)

My endocrinologist says it is my rheumatologist’s responsibility.

And it is.

Why? My rheumatologist, the specialist (not the exact doctor since he has long retired) who first prescribed then kept me on the medication for so long, should take responsibility for this portion of my care, but he/she is NOT.

I am trapped in a very dangerous game of hot potato, and I’m the unhappy spud.

I have an appointment with my actual rheumatologist, not the nurse practitioner who is refusing to prescribe my prednisone, to speak with him on this matter on Monday morning. My endocrinologist is supposed to send him a letter concerning my appointment and what we discussed, my status, etc.

We’ll see what comes of it.

Until then, spuddy buddies, spoonie friends… whoever might be reading this, I wish you well.