Des, glad you found this site - the people here are amazing! Some have a long history of ITP proving you can live with it. Most have had one or more of the "typical" treatments. Read the "Treatment" tab on top of the home page. All are compassionate and understanding as we've been down the path you're just starting and while that's sad, it's a blessing that this site exists to share knowledge.
My journey started similar to your's 10y ago. Healthy, I thought, until a routine physical detected low platlets (24,000). They sort of didn't believe it so called me back the next day for another CBC. That one counted 3,000 and got me hospitalized immediately. I didn't even know what a platelet was!
The very first advise I would emphasize is what server said below - Take a DEEP breath.
ITP is a relatively rare disorder and little medical knowledge about cause or treatment or cure. The second is when the MD says your life is in jeopardy it scares the devil out of you. When they next leave you in the dark about Diagnosis and treatments it scares you even more. Those first days and weeks are a whirlwind of new and strange medical jargon, scary MD explanations and limited ability to process what you are hearing it scares us even more. That doesn't even factor in the family and loved ones who are as confused and scared, perhaps even more and sometime offer misguided "advise".
The next activity you should pursue is knowledge. Read everything here - I think it's probably the best collection of ITP knowledge for non-medical people anywhere! However that knowledge will likely overwhelm you too as you attempt to understand What it is, How to treat it and Why me!! The answer to all three are unknown. There is no known trigger, no single treatment that works for everyone and an unknown Why. HOWEVER, ITP is very livable once we get over the scary time (which may take you weeks or even months and that's OK).
You're now part of an ITP family that will share all we know, counsel when we can, explain what we have experienced and learned. What we have all learned is ITP is manageable with appropriate attention. Life will be hectic for a while until you find your acceptance and confidence but I believe you'll find it just like we all have.
Now to attempt to answer your questions:
1) The typical first Rx is prednisone. It's hard to be certain but your reference to "had high dose of steroids might have been a Pulse protocol where they administer very high doses for several days. The thinking is they might shock your immune system to reset to normal (since it's now abnormal). Like very ITP treatment, it might or might not work - there is NO way to know but steroids are the usual first Rx.
2) They might follow up with a high dose (but less than the pulse dose) of daily steroids. If they do it's for the same reason. But you'll need to "taper" of the dose by a gradual reduction of MG/day over many weeks. This site is abundant with the negative side affects of high and long duration steroids which I won't repeat here. This Rx plan also might or might not work.
3) While ITP rarely goes away in adults - it might. While we'll pray you're fortunate enough to experience that it's unknown if it will return (remember I said no one knows the ITP trigger). But that said it's unlikely to come back every time you get sick. I went 10years without a recurrence and as far as I can tell there wasn't a illness that triggered it recurrence.
4) I'm unaware of research that attempts to identify if subsequent recurrences, if any, will be as severe as your 1,000 (typically referred to as "1" with the thousand implied).
5) How will you know the severity of future recurrence. You'll soon learn there a physical signs of something called "Petechiae". It sort of looks like a rash but when you closely you can tell it isn't (read more above it above). Depending on your Insurance and MD you might have routine and periodic CBC's. You'll should ask your MD about a "Standing order" (aka on demand) CBC so you can check anytime.
6) IvIG is definitely a temporary treatment to quickly lift your counts into a safer zone. It's effectiveness also isn't guaranteed but is typically thought to work in 80% of patients. It can be repeated but like every Rx it has risks but can be repeated.
7) A bone marrow Biopsy is typically used as part of the Dx phase. ITP diagnosis is a process of elimination of other diseases because they're no single test that identifies ITP. You said they're already eliminated Leukemia and I'm not familiar enough to know different ways that can be done but the bone marrow biopsy is a common test. Don't freak out if they do, as I said ITP is a process of eliminating all identifiable diseases/disorders and when that's exhausted they conclude it's ITP.
you sort of asked about chemo drugs. A few chemo drugs, in much lower doses, have been found to sometimes be beneficial in controlling ITP. Again I say with no guarantee. You'll likely get tired of hearing that but what works for one doesn't work for all. Thus your treatment protocol should follow a guideline of Tier1, Tier2 and Tier3 Rx until they find something that is effective for you.
Visit again and often, Ask every question you have. We know the anxiety of ITP and many of us are on the other side of that anxiety. You can gain knowledge, you can vent but you can NOT ask a foolish question - because a foolish question doesn't exist in the world of ITP. You probably don't realize it yet but you've just joined a family of ITP'ers around the world and there's usually someone online who will answer any question you post within a few hours.
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