Refractory to Prednisone -- ME!

Well, two weeks of 60mg of Pred, and I'm at 8K. Hema says I'm now refractory to Prednisone.
Never in a million years would I have dreamed. Always in the past 40mg of Pred could get me into decent counts and keep me there even beyond a taper for at least a year, maybe more.

I know I'll never really know why I'm suddenly refractory, but of course I wonder if NPlate had anything to do with it, because it's the only new thing we've added to my system in 2 years.

So again this morning, I started back on NPlate. Insurance denied it, but the hema pharmacist appealed - also there's some program from the company that helps pay for the deductible.

I'm waiting for the crawly scalp, headache and dizziness, but honestly at this point, we just have to raise my counts. I was playing with my puppy yesterday and she accidentally caught my hand with her tooth and my hand swelled up like I'd gained a hundred pounds and today it's turning red, which usually means it's still bleeding under the skin.

I'm not comfortable being this low at all. Last time I was on NPlate my count went from 14K to 589K in a week. I don't want to go that high, but I would seriously love to be at 50K.

Hey Jill - sorry to hear all of that! Please watch for infection where the puppy caught you. Get antibiotics if it gets any worse.

Thanks Sandi.
Luckily the skin didn't break -- it's a different kind of horror watching the skin swell when you know it's bleeding under the skin. I swear the sight of blood doesn't freak me, but seeing my skin swell just makes me want to pass out.

It's funny that the Pred isn't working this time - my mom pointed out that it's interesting that I'm not having any of the usual side effects - maybe those side effects is how you know it's working.

Sorry to hear about this trouble - and I know how you feel. After years of prednisone use, last Autumn I became refractory- we upped the dose 150 mgs/day, to no avail.

Likewise I can relate to your swelling experience. I remember watching a rather highly raised lump occur spontaneously on my arm - within minutes! - and over the following week as the swelling went away a huge deep purple splotch appeared.

Hang it there!

Mark

Mark -
So what works for you now? Did you take N-Plate or Promacta?

During that period I responded nothing, including IVIG and Nplate -initially. After doubling the Nplate dose each week I did finally respond and used the high platelet numbers for a safer splenectomy. In remission now and off all drugs...