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TOPIC: Diagnosed on Sept 15, 2016 with <1 platlet

Diagnosed on Sept 15, 2016 with <1 platlet 1 year 10 months ago #59368

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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No treatment guarantees a permanent remission though. Rituxan, on average, gives a good shot (60%) at a year of remission. No other treatment does that.

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Diagnosed on Sept 15, 2016 with <1 platlet 1 year 10 months ago #59369

  • jayinchicago
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Sandi the numbers are 20% not 60% for Rituximab with extreme side effects and huge cost.

Whereas Nplate has 50% long term remission rate.

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Diagnosed on Sept 15, 2016 with <1 platlet 1 year 10 months ago #59373

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Jay - 20% will achieve a response lasting at least three years, but the rate for one year is about 50 to 60%. That is exactly what I got....13 months treatment free after my first round. Those who respond will get that after one month of treatment, whereas with N-Plate it could take years to achieve remission. Cost is high for both. I have noticed that those who achieve remission longer than a year are those who have had a splenectomy or multiple rounds of Rituxan. Just an observation.

The side effect list for Rituxan is long and scary, but rare. I've seen hundreds use Rituxan with no side effects whatsoever and I am one of few who had a problem. N-Plate lists few side effects, but I've seen a fair amount of clotting and strokes with this drug.

I am not arguing for Rituxan here by any means even though it seems that way. If I had a choice between the two as a newly diagnosed patient, I'd choose N-Plate or Promacta. I'm not a candidate for either since I have APS antibodies but if I didn't, Rituxan wouldn't be my first choice.

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Diagnosed on Sept 15, 2016 with <1 platlet 1 year 10 months ago #59382

  • jayinchicago
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Sandi I have to disagree on this.
Response is a loaded word and they have not defined it what magnitude.

Only thing I can say is that 50% of people who have taken NPlate for 12 months on average have had meaningful remission. The same people taking Rituximab have 20% remission rate.

Only reason Iam insistent here is many people take Rituximab with out trying out TPO-RAs which is a huge mistake. TPO-RAs are made for ITP but Rituximab is not.

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Diagnosed on Sept 15, 2016 with <1 platlet 1 year 10 months ago #59385

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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The only reason that the TPO's are not first line treatments are because they are newer drugs and are expensive. Personally, I think they should be first-line treatments (not first, but on the list). Many doctors have not used them or are unfamiliar with them because they are old school. I still see many newly diagnosed patients whose doctors recommend the same three things available forty years ago; IVIG, Prednisone and splenectomy. Many doctors are also using the TPO's improperly which is quite scary if you ask me. Prednisone is almost always used first and probably always will be, because it's cheap and could put an acute case in a quick remission. I don't see that often but it does happen. Those people probably never make it to the Forum.

Rituxan used to be last on the list. I was my doctor's first ITP Rituxan patient in 2003. He initially turned me down because he thought that patients had to have had a splenectomy before they could use Rituxan. I had to prove that was not the case and it took a while for Rituxan to catch on. It's not unusual for an off-label treatment to be used for other disorders. It happens all the time and that doesn't make it an invalid treatment. I'm not a huge Rituxan advocate because of the toxicity. I haven't seen this lately, but there have been some doctors who actually used Rituxan as a maintenance treatment, giving an infusion every three months for years to keep counts up. I could not understand the reasoning behind that, because how would you know if the counts would have just stayed up without the treatment? Totally unnecessary, especially since dropping counts are not life or death.

Anyway, yes, 'response' is a loaded word and it has only been defined by R, PR or NR. Some people are happy with a PR and some are not. I define a successful Rituxan response as a year without treatment. Your definition may be different.

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