Maybe not so refractory? NPlate and Pred

Been on a roller coaster lately. Crashed a few weeks ago - at 2k. Started 60mg of Pred which got me up the highest of 15K - dr declared me refractory as Pred used to put me in the high 600K with only 20mg. Started Nplate, got up to 330K, then started pred taper. Today was a week off all Pred, just NPlate and I was at 9K. Blood blisters in mouth, my arm where they took the blood is a horror show - the vein raised up and turned purple, I bled through the bandage and the tape they wrapped it.

So they doubled the NPlate today, hoping for higher counts in a few days. Hema didn't jump to restart Pred, which makes me happy, but he did admit that the Pred must've been doing something.

In the past few days off Pred, I've been itching like crazy - have the tiny red dots to prove it. It's miserable. I wonder if it's a side effect that was masked by the Pred or if it's a sign of dropping platelets.

So tired of this. : (

Sorry you're having so much trouble again. That stinks after doing so well for so long!

I have no idea why you'd have itchy red spots. It wouldn't be from low platelets. Odd.....

Hope you feel better soon.
How do you know if you will become refractory?

I don't think you can predict whether or not you become refractory. My refractory-ness (It's not a word, but you get the meaning) just started with this crash.

And Sandy, the red dots are the petechaie from scratching. The itchiness is all over like I'm having an allergic reaction - scalp, bottoms of feet, legs, but no giant hives or big red places. Except for the little petcheai from scratching. Makes me wonder if it's my system killing platelets en masse, because once my platelets are crashed the itching goes away. I wonder if Benedryl will help during the itchiness.

But I keep thinking something else is going on now. It's just so weird how I keep crashing. This time my gums bled continually which is so gross. I'm tired of looking like a walking bruise. My neighbor girl who is 7, asked, "What's up with all the bruises?" I just said, "I'ts a weird allergy," because why horrify her with a big platelet talk?

Do you guys think it's worth looking into H-pylori?

I think you are having an allergic reaction - as you are seeing with the itchy spots - and that could be exciting your immune system and lowering your counts. What could the allergy be to - that's the question. Probably something you put inside - not a soap. A drug, a food...
Erica

Erica
The only thing I'm on right now is NPlate, save for the occasional tylenol for headache. I took some Sudafed for a cold, but those are both things I've taken before.

But it makes so much sense, because Pred + NPlate worked, but NPlate by itself doesn't seem to be working as well.

Okay, petechiae from scratching makes sense. I get them too from scratching and my counts are fine. I think my skin is thin from all the steroids over the years. But you wouldn't get itchy from low platelets. Could it be from flowers, pollen, cut grass, ie spring things? Maybe it's just from tapering Prednisone; your inflammatory response is in overdrive.

The hpylori test is cheap and easy - they can usually do it when you get the regular CBC. I'd do it just to see.

Although I havent heard of h pylori causing itchiness, it could cause the immense system to freak out.

Allergic reactions are often so hard to understand. When I once had symptoms like yours, it turned out to be from Bounce sheets in a dryer--used on sheets at a friend's house I was visiting.