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Help (labs) distinguishing between primary and seconday polycythemia

Posted , 3 users are following.

Jesskidding
Jesskidding

diagnosed with polycythemia with a hemo/onc and his impression was see you in a year its likely reactive due to long smoking history.  I'm waiting on a second opinion June 24 but recently left the hospital with a headache that fetanyl and phenegram didn't touch/help. 

Im female, 44 years old with a long history (better than a year) of erythrocytosis and leukocytosis for many more years.  I have had elevated platelets on occassion and a complicated medical history.  Suffered two strokes from Lupron Depot for endometriosis at the age of 28 and has been down hill since.  

my current diagnosis and symptoms, (resolved with iron infusion for non existant ferritin) iron deficiency anemia, leukocytosis, erythrocytosis(polycythemia), vitamin D deficiency, cervical rediculopathy, osteoarthritis, petechiae, restless leg syndrome, pain in ribs, multiple joints and long bones, headaches, dizzy, general itchiness, weakness and fatigue... 

3/18/15

WBC 13.4 (range 4.0-12.0)

HGB 17.2 (range 12-16)

HCT 51.0 (Range 36.1-47)

(sorry no differentials)

03/30/2015

WBC 17.2 (range 4-12)

HGB 17.3 (range 12-16)

HCT 52.7 (range 36.1-47)

Here I had what was believed to be a dental infection, a fast growing lump on lower jaw with a decayed tooth well above it, that was ultimately 

extracted, however the lump/bone protrusion still there, never had pain with tooth, nonetheless was put on heavy antibiotic on 4/30 and on April 2 more labs were done with the hemotoligist and read like this. (just over one day on antibiotic)

first normal WBC, albeit 9.9 

Range high of 12)

4/2/2015 (hemo/onc labs)

WBC 9.9 (range 4-12)

HGB 17.1 (range 12.5-16)

HCT 49.9 (range 37-47)

Basophil % 1.2 high (range 0.0-1.0)

EPO 1.3 Low (Range 2.6-18.5)

Immunoglobulin A 470 High (range  91-414)

Immunoglobulin M 91 Normal (range is 40-230)

Immunoglobulin G 1107 Normal (range is 700-1600)

Notes: No M-spike

*also negative JAK2 and checked Phila. Chromo BCR? was negetive

Just this past wednesday was the ER visit and labs

05/06/2015

WBC 18.0 High (range 4.8-10.8)

RBC 5.44 High (range 4.2-5.40)

HGB 17.1 High (range 12-16)

HCT 48.5 High (range 37-47)

MCH 31.4 High (27-31.0)

NE# 11.8 High (range 1.4-6.5)

LY# 4.4 High (range 1.2-3.4)

MO# 1.3 High (range .1-.6)

EO# 0.3 High (range .0-.2)

BA# 0.1 Normal (range .0-.2) incedentily the one normal WBC count on 4/2/15 showed elevated BA%)

IG# 0.04 High (range .00-.02)

I listed the abnomal results only but thought worth mentioning platelets have been okay elevated a couple times the past year and the normal 

results this past month went from normal 324 on 4/2/2015 range of 140-440 to ER visit yesterday of 372 with a range of 130-400 for their lab.

So that's it. As you can see my concern as my symptoms are many and prominent the last couple months and waiting somewhat impatiently on second 

opinion. My biggest concern is a transformation perhaps if primary PV into a leukemia.  Very much appreciate your thoughts.  especially on the 

most recent labs of yesterday. And if EPO is low in a smoker (pack a day) with an Erythrocytosis wouldn't that point towards a primary marrow 

disease rather than being reactive to smoking?

Any info is appreciated, I know it's a lot to look at, I just want treatment for what is happening here and it seems whatever it is is progressing rapidly.  I got my second appt for June 24 but they may step it up as my PCP just sent the ER labs and notes to them yesterday.

God speed and thanks in advance...... 

0 likes, 14 replies

14 Replies

  • james03855
    james03855 Jesskidding

    Posted

    where you do not have Jaks mutation and are diagnosed with polycythemia then the polycythemia is caused by some other condition and if these are treated then the polycythemia will clear up. If you search the forums for posts from harrishill or biker florist you can glean some good information. 

    Hoping this helps

    • Jesskidding
      Jesskidding james03855

      Posted

      Thanks James,

      I have read quite a bit of their threads and I do believe them enlightening.  In my extensive research, and personally, not exhibiting the jak2 mutation does not exclusively rule out primary polycythemia. Have not been tested for additional jak2 mutation like exon 12, for example.  In all the literature I've read, because of the fact that I do smoke a "smokers/secondary polycythemia" would both cause normal or increased levels of Erythropotien (EPO) and a low blood oxygen saturation.  I have low EPO and normal blood oxygen.  In addition to some investigating of my iron deficient anemia, resolved with infusions last year and heading south again (low iron saturation and low to zero ferritin levels being the type with erythrocytosis, leukocytosis, occassional thrombocytosis) symptoms of petechiae, stroke history, bone pain, kidney stones.. low vit D, now onto circulating immature granulocytes.. its compelling me to think otherwise.  

      Found this neat chart

      Erythroid conditions lised with yes no to the four issues here of:

      Iron overload,  Tissue hypoxia,Increased EPO,Increased erythropoiesis

      Ineffective erythropoiesis Yes Yes Yes Yes

      Hemolysis No Yes Yes Yes

      Blood loss No Yes Yes Yes

      Iron deficiency anemia No Yes Yes No

      Aplastic anemia No Yes Yes No

      Secondary polycythemia No Yes Yes Yes

      Primary polycythemia No No No Yes

      Didn't come out in the nice box on the website but the bottom two between secondary and primary is the clincher for me... I have low EPO levels if secondary those would be high... 

      Thank you for your time and writing back.. smile 

      Jess (and yes, should and trying to quit smoking is always being tried, just not ready to say that people with negative initial JAK2 that smoke can't have PV, don't think you'll find a medical professional that will tell you different.) 

      Cheers... 

  • clem19079
    clem19079 Jesskidding

    Posted

    I am really sorry your going through do much. It's easy to say stay smoking when the anxiety of your condition makes you want to smoke more. For restless leg there is a drug called quinine, though I would be hesitant about taking it as especially for you, it would be a dangerous drug. If you only have restless leg in your legs you could try putting your feet in a basin of very warm watter at bedtime. Other than that a hot bath every night. You could soothe the itching with cetrizine (hayfever drug). this is a long shot, but to day I was offered the opportunity to take part in a trial called MAC . It's to trial a drug called Ruxolitnib. I am going to think it over for a while. I might get it permanently I may not. It would be worth asking your consultant about. As side from that, if you ever want to have a good moan , it's not much but I would listen. Take care best wishes.
    • Jesskidding
      Jesskidding clem19079

      Posted

      Thanks clem... 

      I have taken all the meds with awful side effects (mentally) for RLS.  Never quinine, I don't think. Ropinirole, clonadine and then klonopin (clonazepam) was taking 5 tablets of that before bed and still awake all night in agony.  My RLS was sever to the point it was causing pain during the day and muscle twitching, mild foot drop (while driving) that was last year, and then it was exacerbated by almost nonexistent ferritin.  I had a hysterectomy better than a year ago, and then a few months later iron infusions which helped tremendously, until the cardiac symptoms from the infusions, so I had to stop.  It corrected the anemia, (still don't understand the real mechanism, iron store issue I guess, but erythrocytosis anemia?) anyway fast forward now and it's creeping, for lack of a better term, back and I think it's for a couple of reasons.  I'm currently on neurontin (just at bed time) started w/100mg then graduate up to 600/mg currently prescribed 400mg  because of side effects and what was seemingly affective is now not enough, in addition I believe the ferritin has dropped again.  I have to wait for my second opinion until June 24th which is really distressing, for without treatment all this time, already with a stroke history, I just feel like I'm falling through the cracks.  I would go get phlebotomies on my own, by been on disability since 28 years old and then thought, I have too much blood, I'll donate some... haha yeah right, they don't want mine...

      itching and peripheral neuropathy is disturbing, RLS not great, but has been worse in the past, the headache, dizziness and pain are the worst!

      I have been on children aspirin a day

      vicodin for pain

      ibprofen as needed

      alpurinol for aura migraines 

      gabepentine 

      multi vitamin and extra D

      All of the above for better than 6 years except the gabepentine. Horse tranquilizers on deck. :o 

      Thanks for listening, That was a mostly "good moan"

      Hope you are well...

      Jess

  • james03855
    james03855 Jesskidding

    Posted

    Just to say that Clem has given a lot of good advice. You may find that some drugs affect you more. I tried gabapentin and quinine and started to feel weak and very tired and had to stop taking them. Hope you start to feel better soon. 
    • clem19079
      clem19079 james03855

      Posted

      Gabapenton has been great for me. Here in Ireland lyrica had addiction issues so was withdrawn by a lot of surgeries. I already am weak not tired a lot so makes little odds. As for quinine I only take 1 every 3 or four nights as I couldn't go back to restless leg syndrome , it was dreadful not being at rest. And thank you for the compliment. 😆
  • clem19079
    clem19079 Jesskidding

    Posted

    Instead of asking your GP for Quinine, Why don't you buy a couple of bottles of schweppes tonic water, check the label on front of the bottle says it contains quinine. It's bloody rotten taste but take a good glassful at lunchtime then another good glassfull in the evening. That way your not consuming dangerous levels. And if your GP gives it to you in tablet form take them only if you have to. I personally cut them in half so as not to be taking to much (my GP don't like prescribing them) so that's the deal i reached with her. As for the headaches, if they are those horrible headaches where you feel your  brain is trying to force its way out through the top of your skull, then believe it or not a couple f neurophen sorts it. As for you moaning, your not, its you who is going through this and if people can't find the time to let you off load, then their people not worth having around.  bitch and wine all the time, i would be on the end of a rope other wise. So keep it coming, get it all off your chest . smile
    • Jesskidding
      Jesskidding clem19079

      Posted

      yep those headaches.  smile haha I actually like tonic water, especially with vodka and a lemon... Not much of a drinker, just my drink of choice.  I'm not sure what f neurophen is? I'll google. When those headache strike NOTHING helps.  Or has.  Thanks Clem, appreciate it, Am at the end of my rope, slowly getting some slack... I should come here more often.

      I did google quinine while waiting at the pharmacy yesterday, seems scary, did I read in a post from you earlier, it would be dangerous for me? or was that James that said that? Curious why.... 

      read, here in the states anyway that quinine was banned by the FDA for use for leg cramps, and were antimalaria meds with scary side effects.

      Thanks for the info, I totally get what you mean by people in your life not worth having around. Think they lack empathy and are formally called a-holes. haha thanks again.

    • clem19079
      clem19079 Jesskidding

      Posted

      Neurophen is an over the counter pain killer mostly headaches. If the head is what I think it is they will sort it. I was surprised how well they would work being a over counter drug. FDA banned quinine because folk wasn't buying the drug. And yes it is a bit suspect. I have 200mg tablets that I cut in half with a very sharp knife and only take them when I get symptoms. I would rather u tried the water without the vodka To see how well it works For you. As for me I at least don'the get restless leg and I pop a couple of neurophen. Quinine gives me nightmares but rather that than restless leg . Best wishes chicken.
    • clem19079
      clem19079

      Posted

      I really don't spend my day here, I shop online and the emails appear. I do have some sort of life . Baby chicken lol
    • Jesskidding
      Jesskidding clem19079

      Posted

      What, you're not sitting here all day waiting for me to talk to you? Rubbish, haha :P Have a great day, Clem... smile smile smile Baby chicken equals chick. smile smile smile
    • clem19079
      clem19079

      Posted

      Blueberry juice is a very healthy and worthwhile drink. I buy 3 or 4 cartons from M&S . Cheaper than the fruit and does the same thing. A couple of glasses a day will work wonders for you. Especially if you can get Canadian blueberries. P's drink the bits as well they full of goodness.
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