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

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57236

  • jayinchicago
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Hello Everyone,

Longtime lurker first time poster, Age 42, M.

- I had few bruises from August 19, 2016 onwards but never paid any attention.
Got my cbc done after my wife said that bruises look unusual.

- Platlet count under 1, admitted to the hospital given IVIG.

- HEad back home put on 80mg predisone.

- 1 week later platlet recovers to 70
- starts dropping to 31, Do Bone Marrow Biopsy, hemo orders promacta in October 15.
- I discontinue predisone on my own go through massive withdrawals.
- Promacta has no effect, platlet promptly drops to 3.

- Nov 15, 2016 admitted back to hospital given IVIG and start predisone again 80mg.
- 1 week later platlets recover back to 113.
- 2 weeks later platlets drop to 15.

- Start Nplate on Dec 1st given 1 vial 250mg, still on 80mg predisone.
- 1 week later platelets recover back 240.
-2 weeks later cut predisone to 60mg platlets are still 160. (NO NPLATE GIVEN)
- This week cut predisone to 40 mg and will be going CBC on Tuesday. (This will be the third week with no nplate)

Hemo will treat only if platlets are below 50.

Hemo is pushing splenectomy because she says I have refractory ITP, I am planning to wait atleast for 3 more months.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57237

  • Sandi
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Hello! Scolding coming - never stop Prednisone cold turkey! You probably know that now, but it can result in death.

You are not refractory. Refractory means that no treatment will bring counts up. You do respond. You are responding fairly well to N-Plate and Prednisone.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57238

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Hello Sandi,

Yes the withdrawal was awful, wave after wave of headaches.

It lasted for 4 days and then after that it just went away.

I dont have any more predisone side effects or withdrawal effects.
Before I stopped predisone I used to have isomnia now I sleep like a baby.

NPlate is the only one working for me.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57242

  • Sandi
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N-Plate has a pretty good track record for responses. Promacta too. How long were you on Promacta and what dose? Some doctors don't give it long enough. It can take weeks.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57245

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I was on it for 4 weeks on 50mg dose

Starting platlet count was 31 and went 50 in 2weeks.

Stopped predisone but was on promacta for the next 2 weeks. Platlets dropped to 6 and hema told me stop it.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57253

  • Hal9000
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Count went to 50 after 2 weeks? Oh my. That is the exact target count value for both Promacta and NPlate. Why didn't doctor keep going at 50 mg dose with a count of 50? Have I misunderstood something?

Oh my again. Obviously if you drop NPlate like a rock (3 weeks of nothing), you'll probably set another record low in counts. There is a 'rebound' effect with both Promacta and NPlate. That is, if one doesn't slowly taper off those, one's counts can drop below the untreated count value before treatment. Make sense?

Let me see if I understand the history correctly. Would it be fair to say that you don't respond well to either steroids or IVIG? Yes?

With that, I think the terminology phrasing could be you are 'mostly refractory to steroids', and, you are 'mostly refractory to IVIG'. Perhaps that is what your doctor meant?

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57255

  • Sandi
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Well, the Promacta dose could have been raised to 75 mg's at that point. Like I said, it can take time. It's difficult to know what it's doing too when you're on Prednisone at the same time.

Hal is right, counts might drop like a rock with no injection this week. That is what happens with N-Plate though. 50k is the target count, but that was also the borderline count for treatment that week. Dosing N-Plate and knowing whether or not to give the injection is tricky, so I wouldn't consider the drug a failure when there are ups and downs. Sometimes the doctor doesn't get it right, and sometimes you really just need to hang in there until you find stability. Have you read Bandami's post about her son? Your situation is similar.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57257

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Hello HAl,

I respond well to IVIG.

IVIG brought it up to 113 for 2 weeks.

Then a crash the third.


Nplate was a success to begin with 240 after 1 week, 160 2nd week with 20mg predisone taper.

Let us see the third week.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57259

  • Sandi
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That is good, although the counts were too high. That will also happen until the right dose is found. Hang in there. You could be on the right track. ;)

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57263

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Hello Sandi,

Still pondering the splnectomy question.

My wife says that I cannot take nplate forever and will lose effectiveness eventually.
My uncle had ITP was cured after splenectomy.

Sitting on the fence and praying nplate gets me into remission.
I want to give it 3 more months to see before I decide.

I dont want to do splenectomy but at the same time Iam sick and tired of going to the doctor every week.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57270

  • Sandi
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Jay:

N-Plate does not always lose effectiveness. There are people that have been on it for years. Having said that, I would not consider it to be a drug that would be used for a lifetime. Remissions do occur, but you'd have to give it more than a few months.

Weekly appointments would get old. You could get to a point where you are stable enough to not have to go every week though. In the UK, they are permitted to self-inject and only go once a month for counts. Too bad they don't allow that here.

A splenectomy is not a cure but it can cause remission. Before considering it, I recommend that you research it first. Here is a start.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html
(Particularly the topic of splenectomy)

www.onclive.com/insights-archive/immune-thrombocytopenia/risk-of-thrombosis-in-patients-with-itp

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

www.bloodjournal.org/content/121/23/4782?sso-checked=true

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57273

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Jay,

Unfortunately NPlate seems to work differently for everybody.

I was lucky in that it was a great success for me and I eventually went into remission but it did take time and some trial and error.

It initially took 5 weeks of increasing doses before it had any effect on my count (going from 0 to 33) and then it was another 4 months of dose adjustments and wildly fluctuating counts which at times reached some pretty scary numbers.

I had tried all the other treatments (except Promacta) without success and NPlate was my last resort before splenectomy. I would suggest that you give it much longer as you are at least reacting to it even if your numbers are jumping around at the moment which was also my problem.
I am keen to see what your count is after week 3.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57274

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There are folks on here who would love a count of 50, who do not treat even in the teens unless there is bleeding or really awful bruising. My daughter had chronic ITP as a teen, but remitted after just in excess of two years. She handled counts in the teens just fine, with restrictions on sports. She didn't handle the same number so well when she precipitously dropped to it after a decadron pulse. Early on, her doctor treated when she went under 20, and then when she went under 15. Eventually, she tolerated even a 13 just fine. Obviously, there is a number that would be too low, and it seems to vary from patient to patient. Lifestyle also matters, as work and sports can make low counts dangerous. If you are not a bleeder and not in a risky occupation, you may benefit from watchful waiting and seeing what works for you over time. Extra vitamin C doesn't raise platelet counts, but it can cut down on the bruising and nosebleeds, if you have those. There are ways to make a life with ITP work without losing your spleen and setting yourself up for risky infections as you age. That said, I'm not a doctor, nor even an ITP patient, and only the patient and doctor can figure out what works for the patient. One key: be sure you have a hematologist who respects you, listens, and gives you a voice in your own care. I hope you find a good solution soon.
Norma

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57282

  • Hal9000
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jay, ok yes. A count of 113 after two weeks would be good. I thought it was after 1 week - where one would expect something in normal range.

Your NPlate plan to try it out for a remission sounds like you are doing great with research.

Robert has an interesting/alarming background in regards to NPlate. If you have some time, might want to search through his semi recent past.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57290

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Hello Hal,
You are right IVIG brought it up for only one week, second week it was 15.

I got confused because we had 2 CBCs done in that week, one right after I was discharged, second was one week later.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57318

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Got back the cbc results count was 41 with 40mg predisone. I was tapering last 2 weeks from 80 to 60 then 60 to 40.
After the results nplate 250 was given.

Hema told me to taper 20mg.

So this week will be on 20mg with nplate 250 given.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57334

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Sounds like you're on path towards 50, heh?

A note about splenectomy. Is she just mentioning it or actively moving towards that? I ask because she may just be soliciting your opinion on the matter. Many folks refuse that sort of thing so the hema has to take your choices into account on future options she will suggest to you.

For me, after a couple of mentions, I told her that from what I had read splenectomy often doesn't work for older folks (like me). Hasn't mentioned it again since.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57339

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I'm not parting with my spleen. There is no guarantee it will work and quite frankly I feel the risks outweigh the benefits

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57344

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After my second crash and hospitalization she mentioned this to me.

At that point we have not tried nplate and with good responses from nplate we have decided to wait for few extra months.

I will definitely try splenectomy if I don't get a remission by summer.

Even before my itp diagnosis my platlets have always been in the low end 02/2015 160.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57353

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160 is within normal limits. It is far too soon to start thinking about a splenectomy

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57355

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My current number is 41.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 4 months ago #57358

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I wish mine was.

The fundamental treatment goal for a patient with ITP is achieving a platelet count that prevents major bleeding rather than “normalizing” the platelet count....ASH guidelines.

Most treatments aim for a count of 50

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57470

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Got my cbc done today 12/27/16 platlets were 289 one week after nplate.
Going down to 10mg prednisone.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57473

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Jay
You said that you were given 250mcg of NPlate, do you know what dosage level that is in mcg/kg (micrograms per kilogram) as this is how that amount is calculated. It will be between 1 and 10. A level 1 dose for one person is not the same as a level 1 dose for another.
The maximum dose I had was an 8 (720mcg) but towards the end I was down to a 2 (180mcg) every 2nd or 3rd week dependent on my count.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57475

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My weight currently is 196 pounds so 90kgs, 250/90 is 2.7 dosage.

What iam happy about is prednisone down from 40 to 20 and still count went from 240 to 289 with the same nplate.

But rob i still think rituxan contributed a lot to your remission not nplate.
If you had not taken rituxan the then I could have said it is nplAte for sure.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57479

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Hello Rob,

I read your messages, it looks like you are given shots at 150 platlet count.

Mine is more like 50, it takes me 3 weeks to get there.

So at your rate I should be given every two weeks.



I have asked my hema to get approval for rituximab and will try along with nplate.

Iam planning to postpone of my decision time for splenectomy till sept 2017 which is a one year anniversary of my ITP diagnosis.

If in one year I dont go to remission then splenectomy is the way to go.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57492

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Jay
As I was losing approx 150K each week, when my count fell back to 150K it was considered my threshold for another dose otherwise I may have found myself back at zero.

The level 2 dose I was then given would shoot me back up to 600 and then the gradual fall back down would start again. I too weigh 90kg so our dosage levels would be calculated as the same amount of NPlate.

I cannot advise on whether the Rituximab had any effect on me but if you do try that combination, then I hope that it works for you.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57494

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jayinchicago wrote: Hello Rob,



If in one year I dont go to remission then splenectomy is the way to go.


Consensus here in the UK (experts like Drew Provan) think splenectomy is a really bad idea and I have had that opinion from him first hand.

Your decision.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57597

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My son has been on NPlate for 3-1/2 years and they would like to continue. Let me start off with I'm not a big treater no matter how low unless there is bleeding. My son happens to be a non sports or active person so it worked for us (diagnosed at 5). Before NPlate, he pretty much was at 2K for almost 2 years. I chose to give him NPlate so he could attend senior trips, etc. wanting him to have an ITP stress free senior year. He is on the full dose and has been and it took time to slowly move up. He mostly has counts 80-120K but still even on the NPlate drops to 20 and 30, once lower. If we miss one week, he crashes down. Recently, we got home care and they come to him which helps since the hospital is 90 minutes away. I have put alot of miles on my car in the last few years. But all worth it.
For me the ups and downs of treatments caused more symptoms and problems then just the low counts. We are lucky, he's didn't seem to be lethargic or anything, but now he is an adult, so we will have to wait and see when we stop NPlate.
After my son was diagnosed, his step brother had a friend with ITP (now an adult) and he had everything and had his spleen removed. His only advice was do not let them take his spleen. Like said before, everyone's different, but the chances of dying from ITP is less than 1% but dying from an infection of not having a spleen is 10%. If it was a life and death situation, I would take the spleen, but until then, he keeps it. Someday he might make a different decision, but we will see. New research and information is constantly changing.
For us, if my son can handle the low counts, etc. I was able to keep him mostly treatment-free and complete with his spleen.
It's not an easy decision but go with your gut and never let a doctor push you. ITP is a very difficult disorder and different in each person. They spoke to me about a spleenectomy within weeks of my 5-year-old's diagnosis and several times after that until they figured out that I wasn't to change my mind unless something drastic happened.
He also was in the child study for Rituxan (at age 8 when we had a set back), but didn't work for him but seems to work much better for adults.
I can tell you I tried special diets, etc. and it worked well and his platelets shot up, but one slip caused him to crash and after 2nd time, he didn't recover. He seems to be very, very sensitive. Look into homeopathy and diet. I have seen many people do well there. Good luck.

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Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 months ago #57598

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Love him, Drew Provan, meet him many years ago. He helped me with the decision not to treat when people were being attacked for this point of view. We've come such a long way in a short time. And, he's a genuinely nice person.

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