Hmm, it seems names don't show unless in the sig file? Bear with me while I learn my way around.
Thank you all for the warm welcome!
It certainly seems to me that the Bactrim is what precipitated my reaction, but the Hem seems to think it's going to respond chronically at this point, altho, I forgot to mention a supposed viral thyroiditis I'd had maybe 3 years ago, which he seemed to see as an indicating factor of it being auto-immune.
I certainly thought I looked pretty yellow on my second night in the hospital, altho that was gone by the next morning, and could have also either been caused by the bactrim or possibly my body trying to process all the blood in places it didn't belong.
From reading on here, it doesn't seem as if most ITPers present with such sudden and acute symptoms. Most mention petechiae, long/heavy periods or gum bleeding, with oral mucosa hemorrhage mentioned only once or twice that I saw (and I've been poring over this place for days!)
His next line of treatment, if the Pred taper results in another drop (which seems highly likely) seems to be rituxan. My hubby has NHL and has had a number of rituxan infusions; he also has transverse myelitis, for which he was put on pred, but I'm at the same dose he was on, albeit 50 lbs+ lighter. Within a year he needed hip surgery for avascular necrosis... core decompression which was unsuccessful, so he's looking at a replacement at some point in the future. Currently, hubby has some swollen lymph nodes and they're watching him with quarterly CT's to determine when to treat... but it seems I'll be the one getting the next rituxan treatments around here, likely.
How much do people typically see a rise in their PLTs after IVIG? I didn't get all my numbers after each transfusion, but I think it was 12k-30sth-40sh-76k... which wasn't, apparently, as much as the hem was hoping for, since he said he would taper my pred dose if they went up enough, and he decided not to do that.
He is concerned about a sudden drop w/ a taper, and seems to think that if he keeps me at a higher dose for longer it will, as I've read people here say "reset my system" and keep them up... maybe... but having seen what the (lower dose by body weight) pred did to my hubby I'm scared to stay on it, and scared to go off and start hemorrhaging again. I guess he's hedging his bets.
Erica, I think I will defo fill out that form but I want to get my other counts first.. the ones from when I was in the hospital, to give a fuller history.
I hate that my next appt is on the 22nd. I'm scared because a bruise I had on my foot, a week old, which had faded to a nice light blue, now has a new nice red tone on it, because I tend to put that foot under my thigh as I sit... in other words, the pressure from the weight of my thigh has given me a bruise on top of a bruise.
Note, in the pic, the bruises not just from the very careful blood draws, but the bruise on the side of my arm from the BP cuff, and the red lines also from the BP cuff, this pic taken 5 days after said BP cuff was used. Oddly, these bruises look darker now than a few days ago.
-Dotty
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