TOPIC: Last Nplate Shot was on Feb 22nd, 2018

I read through emilyK's posts and she has been out of remission from may 2017. According to her she is currently taking 12.5mg promacta.
Steroids did not work for me nor promacta. IVIG was weak. Only thing worked nplate and I did not try rituxan.
Actually Hal warmer months are my danger zone not cooler. Winter 2016 and winter 2017 I did not need any nplate but when summer of 2017 picked up then I started needing nplate.
Hopefully this summer I have been clear.

Hi Jay - great to read about your six months! 50 is a beautiful number. May you continue to inch up in September!

If I may--I wanted to pick up on your chat with Hal regarding other parts of the CBC. My son has a few "interesting" findings that no one has discussed with us:
Eosinophil - 7% (previous 6%) - both high (normal range is 0-3%)
MCHC 36.8 (previous 35.9%, 35.6%) - all high and increasing
RDW, SD has ranged between 32.3-34.4 - all low
Manual Lymphocyte 56% - slightly high (upper ref 55%)

All the other stuff is normal (except hematuria but that's a different story!). I'll ask at our next consult, but if anyone has tips on what exactly to ask, that would be super appreciated.

Maria - doctors don't usually worry about things that are just slightly out of the reference range. My CBC's are never normal. By all means, ask him though.

Thanks, Sandi. Today's eosinophils were lower, and the rest seems not to be a big deal.
He has continued to have a slightly prolonged activated partial thromboplastin time (aPTT) so they're looking into another coagulation factor.

I'm glad they are being thorough, especially for a child. Let me know!

Jay, take a look at this post by her. No drugs.
pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/29838-jc-virus-rituxin.html#61121

But Jay, you've never taken IVIG alone. It's always been with steroids. It is reasonable to expect a prolonged IVIG response when it is combined with a drug one responds to, eg steroids. Also, you've commented before that your Nplate response was better when taking steroids.

I've been detailing the response of all those with remissions like yours and Emily's. Some 11 folks in all. Going to post for all to review here soon. Blah, on collecting this data I've noticed things that I hadn't before. Looks like row 2b needs to be redefined. Need to update my treatments table for sure.

If you can post the remission data then I can give you feedback on the table.
Right now table is not usable.
How did you come up with Row 3?

2a and 4 are very similar and I dont know how you came up with dosage to diffrentiate.

I would start with 2 broad categories-
1. Immune-Suppressive drugs working
2. Immune-Suppressive drugs not working.

Jay, I created the table using a technique called 'pattern recognition' which is often leveraged in artificial intelligence (AI) algorithms to understand a data set. I have a background that includes AI.
en.wikipedia.org/wiki/Pattern_recognition

There are a bunch of ITP folks in each row. When the 'recognition' is correct, every ITP'er in the population can be placed in one of the rows without, shall I say, any issue or fudging. For row 3, it accurately describes my drug responses, and also, many others that have posted here on PDSA.

Since more than one ITP antibody can exist in some folks, combinations of drug responses are possible. From what I've seen, a vast majority of folks that are newly diagnosed with ITP, and show up here at that time, only have one ITP antibody. So the population posting here is very valuable in trying to figure out the fewest number of rows that are required in the table that ends up allowing everyone to be included.

Hal,
I work in a software firm which does data manipulation to allow clients make informed decisions as a full time job.
My take is there is significant overlap in your table making it not actionable.
It is better off constructing a binary tree to solve the problem.
Plus you need to follow 80-20 rule eliminating one offs, which can skew your data considerably.
There are guys who can get remission using ivig but how likely is it?
Does IVIG significantly affect the outcome, is it reliable? (eliminating a column to simplify the data)

My opinion is the biggest decision point after steroids is to go to rituximab or to NPlate or Promacta.

Jay, the problem isn't that complicated. There are four known antibodies and you're not leveraging that in what you describe. The only 'magic' I have done is to associate the antibodies with the attributes: steroid response, IVIG response, and Promacta/Nplate response. Once the four antibodies can be exactly and repeatedly identified when given those attributes, the game was over. It's a straight forward pattern recognition problem.

Treatment decisions (which do have hidden influences or statistically variable outcomes) can be estimated by successful and non-successful outcome population sizes of constituent (antibody) group members. In the ITP world, high precision of those numbers isn't very useful to patients. 'Works' or 'doesn't work' is usually enough.

Hey all! I'm still here lurking. Funny to see my story referenced! I do not remember when I had my last count done, but I am not on any medication and have not been on anything since I posted the last time. I took the 12.5 for a few days and then stopped. I don't have any symptoms and haven't had any that have led me to get a count done. I'm still active, working out, running or going to yoga every day. I don't know what started the ITP, I don't know my counts seemed to level off and I don't know why I no longer have symptoms. Not a day goes by that I don't think about my platelets, but they haven't stopped me from anything once I got off the horrible steroids. Glad to hear Jay is doing well and his body has found some equilibrium. From my perspective, I've been in partial remission since the summer of 2016, at least I think that is when I stopped taking the promacta! Wishing everyone good health!

Emily, I am glad you're sticking around. A question for you. It's about the wicked stuff, LOL. It's about steroids. Do you have any general rules that you tell yourself about your steroid dose and counts? Maybe something like X mg always gets my counts above Y. Something like that, or maybe a couple of rules like that.

I'm glad your sticking around because it looks like you folks with a flat line IVIG response have some surprisingly special characteristics. More to come later on that front.

Hal
I do not have answer for you. I was really responsive to steriods but it made me so depressed and almost suicidal that i would never do that again.
Emily

Hal, I came across this and thought of you:

www.bloodjournal.org/content/100/5/1774?sso-checked=true

Hal, Iam negative to all antibodies.
So only row I fit is type 4.
But based on the white blood interaction with platelets it looks like I have antibody not yet discovered yet.

So just my case proves that your algorithm is wrong, please explain to me if Iam missing something here.

Maria, that is one big study. I haven't read it before. Probably because of the focus on children. Can you write a summary report, LOL.

I do notice Table 3. I've looked for data like that and come up largely empty. Notice the patients where platelets have risen to 200 - 300 range after 24 hours. Makes me scratch my head and say how could that happen. Normal platelet production is only 25 to 30 per day. Also, 25 to 30 is about how much platelets go up when someone takes steroids and responds well to them. The immune system has stopped destroying the daily platelet production.

But imagine this for a moment. It's a big 'what if' but never the less, here goes. What if 1) the immune systems is destroying TPO and not platelets (row 3) and, 2) the body is somehow producing a large amount of TPO to help make up for the shortage of platelets. In that situation a large one day rise becomes possible.

Also in the table, it looks like most who have this large response remit. Those that have the smaller response can or can not remit. Am I reading that right?

What else should I notice with this study? Perhaps a new thread is needed.

Jay, you would need to be taking an '8' or so dose of Nplate to be in row 4. Plus, I don't think anyone on PDSA has achieved remission, partial or full, that has a row 4 response. That is why the 'remission' column has no drugs listed in it. The studies seem to indicate MMF with/or Cyclosporine is possible, but it's not happened here. Low dose Cyclosporine combined with a relatively lower dose of Nplate or Promacta is the best I've seen here.

I suppose you're discounting a row 2b response because you believe you have a weaker (than row 1) steroid response? Yes, a higher steroid dose looks like it needs to be updated in the table. I hadn't noticed before that a higher dose seems to be characteristic of that row.
As I recall reading from Emily, she needed 80/100 mg to get counts up into the normal range. Not sure what the mg per kg is. If your response is similar to Emily's perhaps you would need 150 mg to get to normal range.

Ok. Any better now?

I did go for my cbc got count of 76 for 09/20/18.
I did have slight infection last week so that might pushed it up.

Hal, sorry, i only saw your response now. My takeaway from that study was that they figured out a way to predict a certain percentage of chronic cases based on initial IVIg response. Yes, you're right, smaller response can but may not remit. The small sample size is a serious limitation of the study.

I have no idea how they got to such a large number of patients so quickly... Your theory is plausible.

jayinchicago wrote: I did go for my cbc got count of 76 for 09/20/18.
I did have slight infection last week so that might pushed it up.

Is that like a bronchial infection Jay? Seems like this has happened to you before. I wonder if an occasional rising count from the flu is diagnostic to just row 2?

Maria: If there were only more posts here by parents to leverage and learn from.

yes Hal it is a flu with little phlegm.

What is concerning is that rise from 51 to 76 is too much of a rise.
I was initially thinking I would find my equilibrium in 50s, now I will keep my fingers crossed for next month.

Interesting these posts about infections or being sick (flu) and that increasing platelet counts. For me, I think it generally lowers them.

Regarding platelets and illness- I have mentioned this before but its an interesting subject- My counts go up when I have a virus/flu illness. But not while I am ill- counts go up the following week. I've gotten CBCs every week for 4 years so I've noticed the rise. Sick with bronchitis for a week and counts were stable around 50. Next week (still coughing but feeling ok, no fever) my counts shot up to 325K. And what was great about that is that my Nplate dose was permanently (so far, 2yrs) lowered. So good luck Jay! hope your counts are trending up!

b2h
My counts also always drop if I have any kind of infection.

I did go for my cbc got count of 70 for 10/18/18.
Last Count was 76 on 09/20/18.
Feb to August 2018, counts have been averaging in the 50s.
So will have to wait one more month to see whether my 70s hold or is it just winter and infection time.

More great numbers Jay.
BTW, don't you take some sort of protein powder? To insure Glutathione precursors are available, I've started to take Whey Protein as described here:
articles.mercola.com/sites/articles/archive/2010/04/10/can-you-use-food-to-increase-glutathione-instead-of-supplements.aspx

Glutathione being for good health. Not expecting anything in the count department.

I only take all Branch Chain Amino Acids no protien bar.

Guys still hanging here last cbc 08/08/19 was at 54, so no shots for the last 18 months.

I had scare this summer with my wife and kids gone on to meet her parents overseas for 2 months, I was drinking wine like a fish. After a month in I started getting bruises on my stomach and some scars on my hand.

Immediately stopped drinking and waited a month to get tested. I was thinking I will get a Nplate shot but luckily my numbers went back 50s which it has been hovering for the last 12 months.

Yeah! Still holding that count. Kind of amazing really to hold so close to a range.

Thanks for the fish story. That may happen more often than one would think. Folks not wanting to publicly admit it as a problem/influence specific to them.

That's amazing!! I'm so happy for you.