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Rituximab has been approved- Do I take it or wait for Nplate?

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8 years 7 months ago #58196 by jayinchicago
Currently Iam on NPlate which gives me about 3 weeks before the next shot.
I started NPlate in December 06. After the 1st week the platelets spike in 200s and then 2nd week in to 100s and the third week below 50.
Last time it went to 82 after the 2nd week and fell only to 25, so a destruction of only 9 a day.

Now we applied for Rituximab and it got approved.
So the question is can I give Nplate some more time or how long to see whether it puts me through remission.
It is close to 3 months already. I am going for the CBC tomorrow.

I believe that I have issues with Thrmobopoetin production in the liver and not with anti bodies per se.
Will Rituximab help in this case?
  • 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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8 years 7 months ago #58198 by Sandi
Rituxan does a completely different thing. It targets B and T cells which are white cells that produce the antibodies that target platelets. Rituxan works on destruction more than production.
If it were me, I'd stick with N-Plate. It's working, and you are in a fairly stable place right now. It can take much longer than a few months to get remission from N-Plate though. It can take years.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 years 7 months ago - 8 years 7 months ago #58200 by mrsb04
Jay. I agree with Sandi. N plate worked for me for 18 months before I lost response. I've just started Promacta but only been on it a week (25mg a day) however bloods yesterday did show a slight increase in count so in a positive frame of mind at the moment as it can take a while to gain a decent response. If I can get a count above 50 and get off Prednisolone then I will be very happy.
What dose of N Plate are you on?
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 7 months ago #58213 by Hal9000

jayinchicago wrote: I believe that I have issues with Thrmobopoetin production in the liver and not with anti bodies per se.
Will Rituximab help in this case?


Jay, not positive I understand.
You are saying that you don't think antibodies are attacking Thrombopoietin, antibodies have nothing to do with it, and the problem is only about a problem in liver production of Thrombopoietin?
If that is so, shouldn't these three things be true. Rituximab won't do anything for you, you will never loose response to NPate, and NPlate will never put you in remission.

As I recall you've never had a platelet transfusion? Seems like a transfusion would prove or disprove the theory. The platelets should live a long normal (10 day) life in that situation. Also, just off hand, seems like your platelet count with IVIG would be odd. Maybe, much slower to rise to peak? Then once peaked, much longer to fall again?
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8 years 7 months ago #58216 by jayinchicago
Hello Hal,

Along with IVIG, I have had platelet transfusion both of the times along with IVIG.

First time my platlets jumped to 70k after a week.
Second time it jumped to 113k after a week.
We dont know whether it is IVIG or platlet transfusion.
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8 years 7 months ago #58217 by jayinchicago
If that is so, shouldn't these three things be true. Rituximab won't do anything for you, you will never loose response to NPate, and NPlate will never put you in remission.
>>>>>>>>>>>>>>>>>>>>>>>
You have posed the most critical questions.

As far as the third question goes "NPlate will never put you into remission" my followup is Is it possible for my liver to cure itself to start generating TPO levels based on my life style changes.

Stopped Alcohol fully.

Another important thing Iam doing is to increase my muscular skeletal system (Do more resistance training) which should increase IL-6 which inturn increase thrmobopoietin level.

"Interleukin-6 increases thrombopoietin production in human hepatoma cells HepG2 and Hep3B."
www.ncbi.nlm.nih.gov/pubmed/10841078
  • 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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8 years 7 months ago #58219 by Sandi
You guys are assuming that ITP stays the same. Antibodies come and go. Responses to meds change. If your theories really worked, ITP treatments could be tailored specifically for patients based on your supposed treatment responses. .It's not that simple.
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8 years 7 months ago #58226 by jayinchicago
I went to do my cbc yesterday and I got a count of 91.

My platlet is holding after 3 weeks and 2 days, not dropping so am I in partial remission?
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 years 7 months ago #58233 by mrsb04
With a count like that no steroids, not a huge dose or N Plate, I wouldn't be even considering Rituximab or surgery if I were you
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8 years 7 months ago #58234 by momto3boys
Congratulations on the great count. If I recall correctly you are treating with NPlate and doing well with it. If you are currently undergoing treatment, I wouldn't call it remission. I would refer to remission as a period with safe counts when you don't require any treatment.

Regardless of the semantics, you are doing great! You have a treatment that is working for you! If it ain't broke don't fix it :)
  • 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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8 years 7 months ago #58236 by Sandi
I agree with our Mom here. Remission is being able to maintain a stable count without treatment. You may still require future injections. Time will tell. At any rate, it is still very good news!
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 7 months ago #58243 by Hal9000
mrsb, ditto. What I want to know, is considering a splenectomy a prerequisite for remission these days?? If so, I'm contacting a surgeon tomorrow, LOL

Congrats Jay.

I do have a comment on your earlier post. About IVIG and platelet transfusions. Let me describe what happened with my counts when I had my appendix out. See if that experience perhaps aligns with your experiences.
day 0, admitted to hospital, count 12
day 1, platelet transfusion equivalent to increasing count of a normal person by 90(=30x3), count measures just 47, given more platelets to increase another 30, had appendix removed
day 2, recovering, count is 30
day 3, count is 57, released from hospital
day 6, count is 137
A few weeks later, back to 12.

So, like you were saying, given a transfusion, then jumped to 137 a week later. But what you haven't mentioned is lower counts between the transfusions (see day 2 above) and the improved count a week later (day 6). Is that what you are saying? If you were given IVIG, what is unusual about having high counts a week later? That sounds typical to me.

Also, about the liver cure/recovery idea. I don't see how there is a direct observable difference between 1) the liver not producing enough Thrombopoietin and 2) one's body producing antibodies to Thrombopoietin. Either decreases Thrombopoietin. Is there an observation that suggests number 2 is false? Just off hand, if number 1 were true, steroids would do nothing, nadda, zero, to your counts.
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8 years 7 months ago #58259 by jayinchicago
Hello Hal,
I was only given 1 unit transfusion with ivig both the times. I dont think it is unusual having high counts after 1 week which is exactly happened to me and crash after that.
>>>>>>>>>>>>>
"1) the liver not producing enough Thrombopoietin and 2) one's body producing antibodies to Thrombopoietin. Either decreases Thrombopoietin."
>>>>>>>>>>>>>>>>>>>>>
1) Is a truly a mechanical problem like filling gas so we can try to induce more TPO which could help more platlets.
2) Is more complicated with feedback loops and there is no decrease in TPO. Also more platlets are more destruction happens if this case valid.

All in all Iam just speculating here, as sandi put it this is a more dynamic stituation.
In my case peak to trough slowly started narrowing. 240->40 (3weeks), (3weeks)15, (After 2 weeks)82->25, (After 2 weeks 2 days) 90.
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8 years 6 months ago #58429 by jayinchicago
This nplate is truly a miracle drug, put me at 141k.
Last cbc 2 weeks back was at 91.
Last shot 250mcg was 5weeks back.

Also just had 3 shots in the last 3 months.
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8 years 6 months ago #58580 by jayinchicago
Went to the latest CBC (03/23/17) now back at 51.
This is not good, my counts are too volatile.

I will go next week to see what happens.