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

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57624

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Drew Provan has now retired although he is going to speak at the UK's ITP Association's patient conference this year.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57625

  • Sandi
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I love him! He is the best. :)

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57657

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What a shame that he retired. I am so glad I got to see him! His calm approach and vast experience will be missed.
Diagnosed Jan 2015 at age 50 with 13,000.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57659

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If one to cross the pond to vacation in UK at that time, would one see folks from PDSA discussion group there?

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57709

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Got the CBC done yesterday platelets came in as 15.
So a new shot of nplate, i looks like nplate is not going to work for me.

After three weeks nplate drops below crtical levels.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57712

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Do you suppose going cold turkey on Pred could have contributed to the low number? Didn't you initially get a good NPlate response along with Pred? That might suggest an immuno-suppressant (eg CelCept) along with NPlate.

Otherwise, got the Rituxan Tee'd up? I was reading some old PDSA posts today. Seems like some are going/went NPlate/Promacta and then Rituxan. Rituxan following TPOAs. But it seems like folks have reported better results doing that vice versa - Rituxan first then NPlate/Promacta. Do you suppose your doc would allow you to try NPlate again if Rituxan fails? LOL, always gotta have a plan...

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57713

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Sometimes it takes more than three weeks to see a better response. Also, sometimes there is a response but N-Plate is wearing off before the actual count. That doesn't mean it's not successful; it just means that the response isn't sustained for 7 days. How are symptoms?

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57717

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Hang in there Jay!

When I first got on Promacta I had no response for many weeks until we bumped my dosage up into a higher range. I was despairing of it working for me, until it suddenly did :)

Maybe they will be able to get a response from you by increasing your dosage in the weekly shot? Maybe it just needs a little more time to work? It can be frustrating with all of the variables. As long as you aren't having extremely severe symptoms, you should be able to wait a bit and see. And if it's just the one count that's causing you to draw the "failure" conclusion, be sure to wait a few weeks for another check. Sometimes you just get an oddball low count.

All the best for more platelets to you!

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57728

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I was not clear in my orginal message.

One shot of Nplate keeps me going for 3 weeks, at the end of the third week last time I was at 40,000.
Now this third week window I am at 15,000.
Now my hema wants me to get tested after 2 weeks.
This would be the first time with no prednisone.

Now my Hema has also applied for Rituxan treatment so hopefully that gets approved.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57732

  • Sandi
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Jay:
Going three weeks without an injection is actually a pretty good response. Most need the shot weekly. As Mom said, you can't base anything on just one weeks count. You're not going to get the same numbers every time. Getting counts done every two weeks is a good idea.....you can track counts better.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57733

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Jay,
After I had become responsive to NPlate and had developed into a bit of a pattern, I was only getting a dose every 3 weeks or so and it was only a small 2mcg/kg dose even though my platelets were dropping at 150K per week . I had also been weened off the Prednisone by this stage as well.

What dosage amount are you currently on?

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57743

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Cheers to great NPlate responses Jay !

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57762

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Hello Rob,

Iam on 250mcg, my weight at 90kgs comes to 2.7mcg per Kg.

I have followup question, how long after Rituximab treatments did you get remission?

Thanks,
Jay

Hal: Thanks for your encouragement.

Sandi: I agree that tracking @ 14 days is very critical since NPLATE studies show the max response is at 12-14 days but my peak is at 7days.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57769

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I hit remission the day of my fourth treatment. Counts were below 10 until the fourth week when I hit 150k. It lasted for 13 months. Some people take much longer to respond...up to 12 weeks.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57770

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Jay,
My last Rituximab transfusion was on the 2nd April 2014, my count stabilised on the 22nd Oct 2014 and I was deemed in remission on the 5th Nov. As I have previously advised I underwent NPlate treatment and a Dex pulse during this time.
They seem to be keeping you on the same 2.7 dose as that is the same amount as you previously advised so at least they have adopted a sensible approach and are not chasing higher numbers.
I noticed with my NPlate treatment that, whilst my count would rise the next week after the injection, the full effect of a dose would be evident 2 weeks later and we had to factor this in to my dosage amount. eg if a dose made my count climb to 400, I was not then given a further dose but the next week my count would climb to 600 before then starting to drop down again.
Do you have any side effects from the NPLate? I used to have a constant headache like a mild hangover.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57786

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Hello Rob,
No I dont have any side effects of nplate. But remember I was on 80mg of prednisone till last month with tremendous side effects now fully quit taking it.
So there was a 6 and half month gap between your last Rituximab infusion and the count stabilization.

I want to try out Rituximab too before the final step towards surgery.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 2 months ago #57907

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so got the results back(01/24/17) after 250mcg of nplate (given on 01/10/17) it was 82, this is the first time with no prednisone.
This is lower than the first time, after two weeks my count was 140 first time.
Next week it will fall below 50 and I will get a shot.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 2 months ago #57911

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Your response to NPlate looks impressive Jay.

Are you still thinking of splenectomy in Sept of 2017? What are the odds of new ITP-focused drugs becoming available shortly after then, LOL

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 2 months ago #57914

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Jay:
I wouldn't think of Rituxan as a final step toward splenectomy. It is generally thought of as a step to avoid splenectomy.

Primary immune thrombocytopenia (ITP) is an acquired immune mediated disorder characterized by thrombocytopenia, defined as a peripheral blood platelet count <100 × 109/l, with the absence of any obvious initiating and/or underlying cause of this thrombocytopenia. (Rodeghiero et al, 2009) The pathogenesis of ITP involves the generation of autoreactive antibodies against platelet antigens, which may result in both accelerating platelet destruction, essentially located in the spleen, and reducing platelet production with impaired megakaryocyte maturation (Stasi et al, 2002). It is the most common autoimmune haematological disease, with an estimated incidence of 1 in 50 000 persons (Sailler, 2008). ITP is usually chronic (>12 months) in adults and after this period, the probability of spontaneous remission is low (Rodeghiero et al, 2009). Treatment is usually carried out in patients with platelet counts <50 × 109/l or with bleeding signs (Provan et al, 2010). Corticosteroids are the standard initial treatment. Intravenous IVIg or anti-D therapy may be effective in emergency settings, and is appropriate in combination with first-line therapies (Provan et al, 2010). Less than half of patients are ‘cured’ with first-line treatment (Provan et al, 2010). For the last 20–30 years splenectomy has been proposed as the main second-line treatment for relapse or first-line refractory patients. The beneficial effects of splenectomy are due to the removal of the sites of antibody-coated platelet destruction. However, controversies exist concerning the role of splenectomy, which has evolved from being the cornerstone of ITP management to a therapy best avoided. Now, a trend to exhaust all available medical treatment options before performing such an irreversible and immunocompromising procedure as splenectomy is debated (Stasi et al, 2010). In the literature, older studies reported splenectomy rates of 50–60% or higher, whereas it is around 20–25% in more recent cohorts (Sailler, 2008). As increasing numbers of patients are reluctant to undergo splenectomy and physicians are hesitant to recommend it, a trend to delay or avoid splenectomy has developed in the USA and Europe thanks to new agents, such as rituximab, a chimeric monoclonal antibody targeting CD20 B-cell surface antigen. Rituximab has shown activity in miscellaneous autoimmune disorders by reducing circulating B cell counts (Cines & Blanchette, 2002; Robak, 2004). Its effects might be strictly related to B-cell depletion and the consequent inhibition of several B-cell pathological activities, such as the production of autoantibodies specific for platelet and megakaryocyte glycoproteins (glycoproteins IIb/IIIa and Ib/IX) (Cines & Blanchette, 2002; Robak, 2004). Moreover rituximab has been shown to up-regulate regulatory T-cells (Stasi et al, 2008; Li et al, 2011).

onlinelibrary.wiley.com/doi/10.1111/j.1365-2141.2012.09169.x/full

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 2 months ago #57926

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Hello Sandy,

What I meant to say was if the rituximab treatment does not work then I will go ahead with splenectomy.
I will give rituximab+nplate combo a full six months before I get the surgery.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 2 months ago #57933

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Nplate regime over here in the UK is a weekly self administered injection of enough quantity to sustain a count over 50.
This regime is continued ad infinitum until it either stops working or you go into remission. It is not intended to be a stop gap to be given when you count is low and is generally only given to individuals refractory to first line treatments. No response after four weeks with increasing dosage is a failure and Nplate is discontinued.

The Promacta regime is exactly the same.

Very odd to be given to you once every three weeks - you are responding very well to a small dose (I took four times that amount).

What exactly is the Haematologist expecting to happen - divine intervention? Remission is highly unlikely without the weekly regime.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 2 months ago #57934

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RJ,

My hemaologist is not giving nplate if the count is above 50k.
So my count drops to under 50k at around 3 weeks.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 2 months ago #57937

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Thanks for contributing all of this information about your Nplate dosages and your response. It's not surprising that you would get lower numbers now that you are off prednisone (doesn't it feel good to be off? I was going nuts on my last bout of pred, congrats!). However, 82 is nothing to sneeze at, that's an awesome response to just the Nplate. It sounds like it's working really well for you.

Just as a personal data point, I would not recommend a splenectomy if other treatments are working for you. I was splenectomized as a child and am still fighting with my ITP (I'm now in my 40s) all of these years later. In addition to managing my ITP (I'm doing promacta at the moment, and expect to stay on it as long as I am getting a response), I have to constantly be vigilant about clotting (my body is definitely weird about clotting post splenectomy) and fevers/infections. The older I get, the more I expect splenectomy complications/side effects to be a problem. So many things seem to get worse with age :)

Anyway, I'd give a lot to be able to go back and get my spleen, but that's one of the only options they offered back in the 80s. Now that there are so many more treatments available, most hematologists are not advising that you get a splenectomy. I'm proof that they sometimes don't work, lol (and introduce more problems)!

Regardless, good luck with your continued treatment decisions. We all have to do what's best in our respective situations. I hope that you can stick with Nplate since it is working so well for you, and I hope that you are one of the people who achieve remission on it. All the best!

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 2 months ago #57939

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Momto3boys,

Thanks for your kind words, Iam taking rituximab as a next step.
Hopefully with nplate and rituximab puts me through remission.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 2 months ago #57953

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did my cbc today(01/30/17) and the count was 25 , given 250mcg nplate shot.

Next cbc is on 01/22/17.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58225

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Went in for the next cbc and my count was 91.
So am in partial remission.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58232

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Count of 91, no steroids and presumably still on triweekly injections. Well done you

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58235

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Great news, Jay!

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58242

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Excellent news Jay. Truly inspiring.

Forgive the NPlate newbie question. Is it that you are above 50 after 3 weeks that makes it a partial remission?

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58250

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Hal the last 3 times my platlet has been 40, 15, 25 after 3 weeks.

Now after 3 weeks and 2 days I am at 90.

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