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Rob16 wrote: rj,
Amber is on an extreme combination of drugs because her ITP is extremely resistant to treatment (refractory). No one treatment alone has been able to sustain safe levels of platelets. She is pretty much maxed-out on Nplate and on mycophenolate, and still the other treatments are needed in addition. I am guessing that IV steroids are limited to bi-weekly in order to minimize steroid dependence, and still the alternate week IVIG is needed to keep her counts safe.
Rob16 wrote: rj,
Amber is on an extreme combination of drugs because her ITP is extremely resistant to treatment (refractory). No one treatment alone has been able to sustain safe levels of platelets. She is pretty much maxed-out on Nplate and on mycophenolate, and still the other treatments are needed in addition. I am guessing that IV steroids are limited to bi-weekly in order to minimize steroid dependence, and still the alternate week IVIG is needed to keep her counts safe.
rjsmyth wrote: Quite a scary combination of treatments you are having - no wonder you are feeling awful!
Seems like there is no direction as to what you are being given. How could anyone tell which treatment was actually doing anything?
Combination therapy is common here in the UK - but four different things at once is in another league.
Can I ask what symptoms you get with low counts?
Even the most refractory of ITP sufferers get an increase in counts with IVIG (albeit briefly).
I am baffled at why you are being subjected to such a horrible regime.
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