Spontaneous remission of some blood counts after Dx

[EPguy]

This just is a question of curiosity I've discussed briefly before. If any members have seen something like this it would be interesting to know.

I've asked two MPN Drs about it and all I hear is "it's complicated" and/or "things fluctuate".

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These plots show some counts and when I started aspirin (ASA) and then HU. Note that only PLT seems affected by starting the therapies. 4 years prior had only PLT out of range.

At the time of my Dx, left end of these plots, my Reds, neut and PLT were all high. This is consistent with PV. But before I started HU all but PLT were already normalized or trending so. From my three months off IFN it seems these neut and red levels are my norm off therapy. It seems to be lots more than a fluctuation since the trends over multi readings are clear.

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Edit Jul 22:

This spontaneous remission is esp interesting because there were 3 separate draws over 10 days from two different labs all three were high in every PV like count. Then all the PV like numbers went down fast thru two further draws before starting HU. Decline actually slowed after starting HU.

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I do need cyto for the PLT, but the question is would I otherwise need it? (VAF reductions are a fine reason anyway)

Most Drs are not curious enough to care about this sort of thing since it does not affect clinical decisions.

[Ovidess]

This is somewhat similar to my situation. Docs called it ET at first, but soon noted the HCT, etc rising and diagnosed PV. I got six Besremi injections and both platelets and HCT fell. I've been off the meds for months but the HCT is holding, while Platelets rose. I've asked several practitioners whether I could possibly lose the PV diagnosis. All said NO! Hmmph! It's like a damn brand seared into me! (But it's true that my red blood cell counts are always high, even though the HCT was tamed. For now...)

[EPguy in reply to Ovidess]

In my case it's like going from initial PV Dx to ET. RBCs did the same see here, three draws are in range but the same smooth decline happened prior to therapy as with the other red counts.

I suspect this much data showing this seemingly remission result is rare, so Drs have nothing to say.

Good thing about PV Dx is more treatments are on label (In US it adds Rux and Bes)

Anyway I'll take PV over Sjogren's any day, but I get to learn about both.

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Hope to your HCT keeps holding. Mine might have held past three months (if I ever needed red control at all) but I needed to deal with the PLT so started the Rux.

RBC Dx

[Minify]

Was that first blood draw done when you were fasting/dehydrated? If so, your Hgb/Hct may have been falsely elevated, as the test is a percentage of red cells in total blood volume. (This happened to me - fasting/dehydrated Hgb was 49; repeat HCT with normal hydration was 46 a few days later.). I always try to have my blood work done when I am normally hydrated now.

[EPguy in reply to Minify]

I agree on good gulps before the draw. At a recent one I was so dry she could not even get the blood to flow out. My blood was almost black. But HCT was still good ~43, strange.

MPN Dr said the color is not a problem. (My O2 is fine)

This spontaneous remission is esp interesting because there were 3 separate draws over 10 days from two different labs all three were high in every PV like count. Then all the PV like numbers went down fast thru two further draws before starting HU. Decline actually slowed after starting HU.

[ritaandscooter1]

Usually the WBC cells are high as well with PV. I don't see you mentioning WBC cells. Most ET people just have the PLT's trending up but other numbers are okay.

[EPguy in reply to ritaandscooter1]

My WBC was high, I included only neut above since that was the one out of range and I think it's the PV marker. Leuk was fine. But WBC (from the neut count) also spontaneously declined from three separate high readings as seen below. Only PLT stayed high as in the top post. It's as if the PV counts all were trending down and was turning to ET.

My EPO was slightly low at Dx but I posted before on EPO low being not unusual in ET also. My marrow also looked like ET per the lab.

Absent even more early blood readings I'll never really know. Maybe the 1st gen Covid I had early 2020 relates to these.

Dr Gotlib said the low EPO is a key reason for the PV Dx, it does match the 2016 WHO table as minor criteria. I'm fine with the PV Dx since it provides more treatment options but my user name relates my view that I think it's ambiguous.

WBC

[LIGEBA]

Just curious. Did you have any procedures done during that time that may have caused bleeding (dental work, colonoscopy, etc)? Have you ever dealt with any kind of internal bleeding (ulcers, etc)?

[EPguy in reply to LIGEBA]

No medical care near that time. Any dental cleaning if I had one should be ok as I don't bleed from them.

I did have 1st gen Covid March 2020, 8 months prior and I felt off most the year. Feeling suddenly way more off was why I went to Dr at my Dx time. What ever was extra offing me might have raised the RBC, WBC temporarily.

2016 had all ok except PLT at 640.

[LIGEBA in reply to EPguy]

Interesting. I just checked my number from before I had Covid and after and they did rise then dropped (not into normal range) about 6 - 8 weeks after having Covid.

[EPguy in reply to LIGEBA]

Makes sense Covid could mess with it. In my case 8 months would seem enough to calm it down but the drop was large enough to attain normal.

[Cranston3x in reply to EPguy]

My mother's case of PV has been only RBC, MCV and related RBC rise but not WBC and PLT for the past 20 years (treating w HU only) and after Covid shot (1st and 2nd shot being Moderna but 3rd being Pfizer), the WBC started to rise, but still in normal range then Covid (Omicron) and it threw her off for 7-9 months, with WBC kept being high, 15-22k/uL (it never passed 13k/uL before for her ever in the past). Checked with 5 top hospitals of the country and all could not say anything to explain except she might have an infection during the time (which was not true, or could not be identified with blood test somehow).

Then later things got resolved until now my mother got to use Rux and after 2.5 weeks had to reduce to 5mg x twice daily (starting dose was 20mg x 2 daily) since her PLT down to 98 k/uL. Her PLT before switching from HU to Rux was 188 k/uL (under 200 k/uL) so seemed to be due to overdose of Rux.

There were several times my mother's PLT also got to 300+ k/uL but never passed 400 k/uL and she was Dx with PV back in 2002. I read @ritaandscooter1 comment that WBC is usually high with PV but it has never been true with my mother. Only several times she got mouth ulcers, due to HU side effect then it does rise to 10-13 k/uL then later resolved after infections were gone.

I am also curious about the numbers of pts with PV and only has RBC affected and how Covid vax and Covid itself alter the blood counts and if the change is stable afterward or not.