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

I have been averaging between 48 to 64 platlet count over the last 4 months with no intervention.

So from October 5th 2017, I have only had 3 shots of 250mcg of Nplate.
1st was on October 5th, second was december 14th and 3rd was on feb 22nd.

After my latest shot on feb 22nd my platlet counts have been hovering around 50s.
Keeping my fingers crossed to see whether my count can hold up.
My Hema reduced my shot threshold to 30, so I get a shot only when it falls below 30.

I dont whether Iam having less destruction or more production.

That's great news, Jay! Thanks for the update!

Sounds like you're headed to that coveted partial 'remission from Nplate' status. If not now, soon.

LOL, if you tell me you cut out sugar and that is how you did it - I'll believe you.

Only one thing I can tell you is that my wbc counts before ITP 02/01/15 was in the mid 4s, 09/13/2016 was in the mid 4s (When I was diagnosed with ITP).
In my latest it was 7.2.I have added weight lifting to my regiment and that might have something to do with partial remission.
As always correlation is not equal to causation.

How about glucose levels? Did lifting weights lower your glucose? Or, somehow raise it?

I have not been monitoring glucose levels but the fasting glucose level is at 90 couple of times I tested.

Ok. Nothing on the glucose level then.

On the WBC counts. First, I note my last WBC count was 5.2. Not far off from what you report. But what about the white blood cell constituents though?

Does your lab report break down 'absolute' and 'relative' (percentage) of Neutrophils, Lymphocytes, Monocytes, Eosinophils, and Basophils? Can you estimate which one of these is the one which is changing your overall WBC count? My guess would be Lymphocytes (B cells and T cells) - which would also be indicative that you have a 'destruction' problem instead of a 'production' problem.

Okay I have never thought the way you are thinking.
There is a clear relationship formed after October 22nd 2017 were my platlets have been maintaining.
Lymphs at 35% is creating destruction and at mid 25% it is holding up.

Date, lymphos%, platlet
May 29, 24%, 52
feb 22, 31%, 38
Dec 14, 36%, 37
Oct 22nd, 36%,31

I have just put a data dump of all my lymp% below.


24 %

Date:
May 29, 2018 04:43 p.m. CDT

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28 %

Date:
May 08, 2018 04:38 p.m. CDT

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29 %

Date:
Apr 10, 2018 04:41 p.m. CDT

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27 %

Date:
Mar 15, 2018 04:52 p.m. CDT

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31 %

Date:
Feb 22, 2018 04:31 p.m. CST

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24 %

Date:
Feb 01, 2018 04:44 p.m. CST

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26 %

Date:
Jan 18, 2018 04:48 p.m. CST

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28 %

Date:
Jan 04, 2018 04:53 p.m. CST

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36 %

Date:
Dec 14, 2017 04:46 p.m. CST

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35 %

Date:
Dec 07, 2017 04:31 p.m. CST

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31 %

Date:
Nov 28, 2017 04:43 p.m. CST

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27 %

Date:
Nov 07, 2017 04:53 p.m. CST

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28 %

Date:
Oct 24, 2017 04:39 p.m. CDT

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36 %

Date:
Oct 05, 2017 04:41 p.m. CDT

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jayinchicago wrote: Okay I have never thought the way you are thinking.

I have a room full of monkeys typing on typewriters. When they create something interesting, I just copy it. Some call it plagiarism.

There is a clear relationship formed after October 22nd 2017 were my platlets have been maintaining.
Lymphs at 35% is creating destruction and at mid 25% it is holding up.

Date, lymphos%, platlet
May 29, 24%, 52
feb 22, 31%, 38
Dec 14, 36%, 37
Oct 22nd, 36%,31
...

I dunno. Take a look here:
May 29, 24%, 52
may 8, 28%
apr 10, 29%
mar 15, 27%
Feb 22, nplate

Lymphs went up to 29% (expected) but then went down (unexpected?). Down to 24%. Has that happened before? Did platelets go up too from Apr to May?

I have a room full of monkeys typing on typewriters. When they create something interesting, I just copy it. Some call it plagiarism.
>>>>>>>>>>>>
LOL. Only thing I meant was I was thinking of neutrophil \ Platelet relationship not lymphocyte.
Here are the numbers requested-
May 29, 24%, 52
may 8, 28%, 48
apr 10, 29%, 64
mar 15, 27%, 57
Feb 22, nplate

So yes numbers are all over the place.

Yes, those counts are all over the place.
So, looking at the data. Relative Lymphocyte data seems to be more useful than Absolute Lymphocyte data? Or, are absolute levels not given?

How about this association on low lymphocytes and exercise from this website :
'
Lymphocyte counts below the normal range ... can occur after a cold or another infection, or be caused by intense physical exercise ...
'
I don't know why exercise would do that, but that's what it says. On the other hand, if exercise affects Treg cells then that would explain it.

okay got my labs today June 21st, my platelets are at 54.

Sounds good Jay. What is it, 4 months since last Nplate? Feb 22?

I stumbled on this article on exercise. Thought you might be interested. It differentiates between exercise and prolonged (hour long) exercise. That exercise causes Neutrophils to go up.
"Effects of exercise on lymphocytes and cytokines"
bjsm.bmj.com/content/34/4/246

Hi Hal,

Great link and good discussion about exercise and immune system.Just so you know I have always done strenous exercise 1 hr a day (30minute running and 30 minute body weight) even when I got ITP.
The change was starting March 2017 I started doing resistance training instead of body weight exercises for 30 minutes (bench press/Squats/dead lifts/back/biceps). Still doing cardio after lifting.
I also added a supplement Allmax Aminocore which provides 8mg of BCAAs, B12s and Folic acid.
All in all this could be pure correlation, it is purely possible NPlate because of rarity of my shots took lot longer to put me through partial remission.
Still the jury is out at 50+ Iam barely treading water.
Regards,
Jay

Jay, on your last count of 54. What did the lymph % do?

I've been looking over my own lymph percent and absolute values. Trying to make heads or tails of it, especially around my rodeo with Danazol earlier this year. After the first month of treatment both percent and absolute values went sharply down. Then on following months, percent lymphs slowly went up while absolute lymphs stayed about the same.

My guess, based on what has happened with your lymphs at remission, is that I need to find a dose of Danazol that, as consistently as possible, drives both lymph values lower and lower. From what I've read, Danazol dosing can be really odd with some people. With some, a higher dose can actually do the reverse of what you want. A higher dose can lower counts instead of raise them. I think I am in that group.

You talk about treading water with counts. I wonder if you had continued Nplate treatments a few more months if it would continue to raise your baseline count a bit higher. What do you think?

Got done my labs July 12th,2018 count was at 48.
Last 4 counts are 48,52,54,48, each count has been done at 3 week gap.
"you talk about treading water with counts. I wonder if you had continued Nplate treatments a few more months if it would continue to raise your baseline count a bit higher. What do you think? "
I dont know Hal, every Nplate costs me $350, the first one for the year costed me $1,000.
Iam happy taking the most minimal as needed.

"What did the lymph %"
for 54 it was 26%

Ouch on that payment per shot. That is not fun. I don't blame you for not taking one if you don't need it.

All of those counts are essentially the same, so you are amazingly stable. That's really awesome for every 3 week labwork. I hope you extend your streak!

jayinchicago wrote: ...
"you talk about treading water with counts. I wonder if you had continued Nplate treatments a few more months if it would continue to raise your baseline count a bit higher. What do you think? "
I dont know Hal, every Nplate costs me $350, the first one for the year costed me $1,000.
Iam happy taking the most minimal as needed.

Volunteer for a Dex pulse?

Jay- have you checked into Amgen's First Step program? Amgen will pay your copay up to $5000. every 6 mos. You must have commercial private insurance, (no government programs such as Medicare, ObamaCare, etc). Plus the doctors office must submit an EOB explanation of how Nplate was charged every time you want reimbursement, which for me is once per year. Amgen pays about $5000+ for me every year. I couldn't afford the Nplate copay without this program. The financial counselor at my hemo's office signed me up for the program and handles all the details.

I just signed up this summer but not have the need to use it yet.

Went for testing on 08/2/2018 and got result 51.

So now my immune system has balanced at 50s with no medication.

Great news Jay. I am so envious

That is good news! I'm glad to hear it!

Partial and complete remissions from the orphan drugs Nplate and Promacta.
Really amazing. Serendipity at its finest.

One more thing HAL my WBC count in my last test has gone down to 5.48 from 7.20. So this is the first time WBC is in the 5s and my platelet are holding up.

One more thing I have to give kudos to my hema for coming up with this formulaic method of treatment. One of my theories are that key in getting remission is to persist with the treatment which works but dont over do it so the treatment will stop working.

So body can sometimes find its way out of the jam.

Jay- Thanks for saying that. I've thought of something like that too with Nplate. I have lowered the dose (from 495 to 408) and expected the counts to drop but they stayed the same around 30-60. That was a surprise. Then later- I get Nplate weekly but twice missed a dose so went 14 days without Nplate. My counts dropped a bit (from 24 to 21, and from 30 to 16) but then came up higher (46 and 54) when I finally got the injection. It just seemed like there was a balancing going on- like if I back off the Nplate, then my immune destruction also backs off? Not sure but from my experience, more drug does NOT always equal higher platelet counts. Sometimes a higher dose can make my counts crash. I crashed to 3K and to 5K when dose was being switched back and forth, 453 to 495mcg.
Sounds like you have an excellent doctor. I have thought that I would like to try reducing injections to every other week, but DOUBT my hematologist would go for it!

Okay guys got my next test result August 23rd and Iam at 51.

So basically Iam stuck 50 +-4 for the last 6 months. Let us see how long this lasts.

Nice Jay.
FYI, here is EmilyK thread when she came out of a 50s count partial remission. She didn't have an idea on what caused it. I asked.
pdsa.org/discussion-group/7-treatment-general/29441-update.html#56595

Should I notice that you are both exercise fanatics?

Hi Hal,

After reading Emily's story it was a bummer to know she just got a partial remission only for a year May 2016 to May 2017. Got my hopes too high that I wont be needing any treatment.

In my case I believe strength training played a major in my remission especially IL-10 gets secreted primarily in our muscles which up regulates Treg cells.

I stopped doing heavy lifting from 02/2015 and in 18 months got ITP in 09/2016.
Started back strength training in 02/2017 was in some remission in 10/2017 and partial remission in 02/2018.
Regards,
Jay

Jay, no, you have arguably the best outcome for chronic ITP there is. Emily took some more Promacta and went back into partial remission after that thread. As far as I know, that is universally the case. Row 2a and 2b appear to have unlimited partial remission renewal capability with the TPO mimetics. On the other hand. Theoretically, if Promacta doesn't work for you, and you loose Nplate response, it is possible nothing will then work except steroids.

I need to go through my notes on those who are row 2 and search their posting history. See how many have exercise as a big part of their life.

On re-reading my questions to Emily, I wonder if you or her are going to come out of remission during the upcoming cooler months. The time when the flu becomes pervasive. It would be interesting if you both came out of remission at roughly the same time.