(in deep manly voice) hello there.....
Glad to see there's a "man cave" around these parts!!!
I'm mid-fifties, an active, happy guy who one night in 2010 got a non-stop nosebleed. I searched online for "sudden onset hemophilia" at three am until the blood covered my keyboard. Then the gums started too....how inconvenient! A friend who happens to be an ambulance driver took me to the emergency room, were I was to stay for almost six weeks at around $50,000 per week, all-inclusive rate, I would find out later. Thank goodness for my mediocre health care plan; I was on the hook for only half the "full fare."
Since I could not, would not, "clot" they cauterized my nose, but I swallowed blood for days, tubes hanging and my mind racing with Dexamethesone.
A horrible intro to a weird disease.
EVENTUALLY with help of a peer review system ("the cancer board" even though it was ITP) the doctors figured out the drugs I responded to (WinPro, I think was the fourth or fifth course of treatment.) and Dexamethesone.
Let me tell you about The Dex, my Salvation! Wonder drug! A normally upbeat, optimistic and chipper guy, I became SUPERMAN with Dexamethasone. Only stronger. I was ready and willing to save the world. From my hospital bed!!!
Four years of remission....my hemotologist says I will never have to see him again due to consistently normal platelet counts; 120,000-150,000 range. GREAT! I am free of ITP!
Not quite, Jim!
Round Two began in November 0f 2014, with the tell-tale patechia, slight gum/nose bleeding (not as bad the second time) and all-over bruising. I spent "only" three days in hospital for IV-IG and Prednisone. No Dexamethesone for Jim in Round Two as it caused a MAJOR psychological attitude enhancement in Round One.
Last week began Round Three. Same symptoms so I know the routine, blood count >1,000 and 100mg Prednisone daily since 5-22-15 followed by 48 hours in the hospital for my IV-IG. Platelets at 12,000 "and rising." So far the Prednisone is causing only minor inconveniences. I realize I am no SUPERMAN, but I have an even more positive outlook than usual. Sleep comes only via the couch and a blaring TV at one am.
Day after tomorrow is Monday (6-1-15) my first try at Rituxin, a little anxious but hopeful. RX in hand for Demerol, as Doc says it may cause "the jitters" I haven't found info on this just yet. Injected Demerol, I read the little label. Do I do it myself? When? Where? Will I reach around to my buttocks??? What if I fall and bleed out? So many questions, so little time....
ITP is getting easier/more predictable for me, not the scary, weird, major life-complication it was initially.
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I'll check in here occasionally. Glad I remembered this support group last week!