On another subject, I think it was Weird Jack who actually went to England recently and had the Indium scan
Not me. If I had the extra cash laying about to do that....well....I'd probably use it for more pressing issues.
Promacta is expensive because GSK can charge whatever they wish to charge. Same with Nplate.
Until the owners' lock on these two drugs expires and a generics surface, we're stuck with the cost. I don't expect a generic to happen anytime soon. There just aren't enough of us to warrant it. Had it not been for government research grants for 'orphan diseases' I doubt we'd even have Promacta and Nplate. Not that many people have ITP.
You must have looked at the 50mg dosage...I used to take 75mg and that was around $9,000 a month. My previous insurance covered Promacta nicely with a $40 co-pay. My current BCBS (mostly BS...as in Bu**Sh*t) insurance has a series of hoops to jump through...and if you succeed, they'll cover everything AFTER the the $4,000 annual max-out-of-pocket.
Or......I can take generic Cellcept at $10 a month co-pay and no hoops. Heck it's only around $40 without insurance.
Gee, guess which option I chose this year?
As Sandi inquired; What treatments have you tried so far?
ALL ITP treatment is trial and error.....ALL. Because all of us are different. Some folks get lucky and the first thing they 'try' works for them, some of us 'try' various things until we find one that works. And sometimes drugs just 'stop working'. I took Cyclosporine for a year or two, one day my counts dropped back to 4k and Cyclo would not do anything after that. I switched drugs. Hang in there....It's ALL trial and error.
16k can be perfectly livable if you are not bleeding, feel okay, and not bruising or covered in spots. A lot of us live just fine with what are considered low counts. The trick is finding a hematologist who will work with you....not just talk at you.
My most recent count was 19k. I stay in the 12k-20k range now with Cellcept. Had oral surgery a month ago and it was a non-event. We're all different....counts are just one indicator.
Keep your spleen as long as you can. It may not be much, but it's the only one you have.
100 years ago splenectomy for ITP was cutting edge....so was the Model T Ford, the Wright Flyer, Hollywood made its FIRST movie (Squaw Man), and Charlie Chaplin had just been signed with Mack Sennett. Penicillin hadn't even been discovered then and Prednisone was still 40 years in the future. Many things have changed over 100 years...including ITP treatments.
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