1. Community
  2. Blood & Immune System
  3. Polycythaemia Rubra Vera

Looking for info

Posted , 6 users are following.

txmom4life
txmom4life

My doctor just referred me to an oncologist for "acquired polycythemia" Naturally I've been trying to read up on it bevofore my appointment in 2 weeks. I can't believe that I would have such a rare disease. Other than increasing fatigue the last 12-18 months I am mostly in good health I'm a little overweight by maybe 30 pounds. I had a stress test a year ago and my heart is good. I don't smoke. I drink in moderation. I did have an episode of gout in one toe last year. But it's cleared up. My biggest complaint is how tired I am. I can't even explain it. Feels like my whole insides just no longer have any energy. I really have to push myself some days. My labs have been elevated for several years. Here are my most recent tests results. I just want to feel good again. I feel like it's all in my head. sad

HEMATOCRIT 37.0 - 47.0 %

7/13/15 - 48.8H

2/13/17 - 48.8 H

5/9/17 - 50.4 H

HEMOGLOBIN 12.0 - 16.0 g/dL

7/13/15 - 16.4 H

2/13/17 - 16.6 H

5/9/17 - 17.0 H

RBC 4.20 - 5.40 10*12/L

7/13/15 - 5.48 H

2/13/17 -5.60 H

5/9/17 - 5.77 H

RDW 11.0 - 15.0 %

7/13/15 - 12.4

2/13/17 -14.2

5/9/17 - 14.3

PLATELET COUNT 150 - 450 10*9/L

7/13/15 - 218

2/13/17 -225

5/9/17 - 247

RDW 11.0 - 15.0 %

7/13/15 - 12.4

2/13/17 -14.2

5/9/17 - 14.3

WBC 4.8 - 10.8 10*9/L

7/13/15 - 6.3

2/13/17 -4.5 L

5/9/17 - 9.2

0 likes, 28 replies

28 Replies

Next
  • peter98873
    peter98873 txmom4life

    Posted

    Sorry to hear you seem to have a problem with PV and as you say , it is a very rare disorder but eminently treatable with professional assistance.  Unfortunately, it remains an incurable illness.  The facts you supply seem not abnormal and it should be remembered that as with blood pressure, these readings can fluctuate according to your lifestyle.  It is essential for you to visit your specialist and you will discover that it will take a little time to complete the tests they need to correctly diagnose your problem accurately.  If the tests prove positive for PV then you will be prescribed treatment that will almost surely improve your well being.  Depending on the tests the treatment will be directed at your situation only which may not be the same as others affected by the same disorder.  We are all different in biological make-up and require separate care.  The symptoms you are suffering do seem compatible with PV but need not indicate PV.  It is a question of being a little patient and waiting for the test results to arise.  I am sure you will receive extra advice from others on this forum and who can be a good source of information and support.  My best wishes to you txmom4life.

    Stay positive.

    Peter.

    • txmom4life
      txmom4life peter98873

      Posted

      Thank you for your reply and assuring some of my concerns. My only added new concern is after weighing this morning. I've lost almost 5 pounds in 3 days with no changes to my diet. I will ultimately monitor that daily for the next week as I know we do have fluctuations in our weight. But mine almost always stays with a consistency of within 2 pounds. I am just a worrier by nature but I know whatever prevails that I will be fine.

      Thank you again!

      Tammie

    • justin23294
      justin23294 txmom4life

      Posted

      I'm not a doctor. But looking at your blood test .The counts are just a little over normal.Your platelet count is normal. I wish I could say the same about mine. Please go to an hemothalagist and get a bone marrow test or any other test he may recommend. Hopefully the dr. can find out why you're s tired .I doubt that you have polycythemia. Please keep all of us posted. Good luck.

    • Zapamania
      Zapamania txmom4life

      Posted

      Hi are you male or female?  The Drs like the hematocrit for men to be 47 or under, women 42.  Justin is right, your platelets are good.  Peter is right that somehow the gout seems to be associated with Pv, as is fatigue.  When I was first dx I lost weight, like you, about 5 lbs without trying.  You need further testing. Are you jak2 positive?  You really need a bone marrow biopsy to tell the tale.  Relax for now, and try not to worry.  Good luck. Zap
    • txmom4life
      txmom4life Zapamania

      Posted

      zapamania

      I am a 54 year old Female and my hematocrit was at 50.4 last test 2 weeks ago. My oncology appt is in 12 days. Can't come soon enough for me.

      How old were you when you were diagnosed and what was your platelet count? Mine is within normal range.

      Thank you for your reply!

      Tammie

    • Zapamania
      Zapamania txmom4life

      Posted

      Hi Tammie I was not quite 60 when dx.  My platelets were 490, slightly out of range, 450 being max.  Your hematocrit is quite high.  They want a woman to be no more than 42, men I believe 45.  But your plates are within normal range.  You could possibly have secondary polycythemia.  Just guessing, of course, I'm not a dr.  Good luck and let us know how it all turns out.  Linda

    • Zapamania
      Zapamania

      Posted

      hi Tammie, I just picked up the fact that you lost 5 lbs in 3 days.  Before I was dx so did I.  Interesting!  Again, as Peter mentioned, you're in the early stages of being dx at all.  Make sure you go to a hematologist.  You need further testing to see if you have the Jak 2 mutation or the Calr.  It's very confusing. We're all here to help if you need it.  Between us, we have a lot of experience. Linda

  • peter98873
    peter98873 txmom4life

    Posted

    Hi Tammie,

    If you are very concerned about your weight loss it is something best discussed with your doctor.  PV is generally recognised by a defective gene (JAK2) at birth but it is more recently suggested that is could arise from another illness with an internal body organ.  It is not deemed hereditary by nature nor transmittable to others.  Recent times have seen medical research provide some new drugs to treat this problem and some look quite promising, but at this time most are not available for general prescription.  I was first diagnosed with PV some 20 years or so ago and know I was affected by very vague symptoms before this, without actually realising what they meant.  They were simply brushed away.  There is a suggestion that gout may in some way be connected to PV but nothing specific has ever been confirmed.  At the moment you have no confirmed diagnosis of PV so it might be a little premature to furnish too much detail.  I expect you will be frustrated a little having to wait for your results but in the long run, it is worthwhile.  Keep as fit as you can, maintain a healthy diet and keep in touch here if you need.  There is plenty of experienced advice available but do discuss things with your specialist.  Normally they are a mine of information.  I am in UK but others on this forum are from US and other countries so you will realise that PV is not restricted to one place.  Good luck.

    Peter.

    • txmom4life
      txmom4life peter98873

      Posted

      Thanks Peter. I will monitor my weight and call up my family doctor if I continue to lose weight as it normally only happens when I am on a strict diet and exercise plan. I was very surprised to see the loss of pounds so suddenly.

      One thing I am curious about. If this is a disease you are born with, why does it take so long for it to be diagnosed. At what age was your diagnosis?

      Thanks,

      Tammie

      I plan to get back to exercising, just can't get the energy to go. But I know it does make me feel somewhat better.

  • peter98873
    peter98873 txmom4life

    Posted

    PV is a very variable disease and normally afflicts people over 40 but this is generally when it becomes apparent.  It can lay latent for a great deal of your working life and slowly begin to affect you with mild symptoms.  These increase until you realise something is amiss and you need to visit your doctor who, in most instances, will refer you to haematologist (specialist in blood disorders).  This is when tests are required to discover your precise problem.  These tests can take a number of weeks and include your weight, height and other blood calculations, all of which are needed for analysis and to supply you with the correct treatment of which several are available.  The first diagnosis is to evaluate the circumstances to arrive at the correct decision so that the best treatment is prescribed for you.  We all went through this procedure at the outset.  Mine was preceded by my feeling quite mild symptoms for a number of years, maybe 20 years or more, before I finally had a blood test and was latterly disgnosed with PV.  Tiredness and lethargy are quite common symptoms.  When you visit your specialist make sure you put any questions to him/her.  They really are the knowldgeable experts and will assist if possible with relevant information.  It can be a bit frustratiung but try to be patient right now, it will be to your benefit in the long run.

    Good luck.

    Peter.

  • txmom4life
    txmom4life

    Posted

    I saw the oncologist today. He seems to be leaning more toward PCV. He ordered an ultrasound and various lab work to check for gene mutations. I still feel it may be secondary. (I have pain in my upper left quadrant side area. When he checked my stomach I did have pain in the kidney area when he pushed on it.) I also told him my father used to have to go give blood regularly but I didn't know exactly why. He has passed away and my mother is 87 and she couldn't remember either. I just remember that he gave it because "he had too much blood". That and given the fact that all 3 of my red blood counts have been high on every single lab since 2013... I feel that's why he thinks it's PCV. Just not sure why none of my doctors have ever questioned it before.

    Anyways. Ultrasound tomorrow. Lab work on Monday (they only draw labs for the JAK2 Monday-Thursday??) my follow up visit is June 14th so hopefully will have some answers then.

    Doc told me I was the 3rd patient he saw today presenting with polycythemia symptoms. He thought that was odd, as we were all new patients.

    Have a good weekend everyone!

    Tammie

    • txmom4life
      txmom4life lidia1972

      Posted

      Last lab on 5/3 :

      Hematocrit 50.4

      Hemoglobin 17

      RBC 5.77

      They go up a little every year when I have my labs.

    • Zapamania
      Zapamania txmom4life

      Posted

      Hi Tammie the pain you are describing could be your spleen, that's where it's located, upper left quandrant.  Pv causes your spleen to enlarge.  Glad you're getting an ultrasound.  Also your hematocrit is quite high.  Women should be 42 or under.  It's takes a lot of time to get a proper diagnosis.  We've all been through it.  Then if you get the dx it's takes a long time to process it cause it's so darn confusing.  Good luck. Zap

    • txmom4life
      txmom4life Zapamania

      Posted

      Thanks for your reply. My 'crits have been high since at least 2013:

      1/2013 - 47.6 H

      7/2014 - 48.5 H

      7/2015 - 48.8H

      8/2016 - 50.3 H

      2/2017 - 48.8 H

      5/2017 - 50.4 H

      Patience is not easy for me. Going to need to work on that.

      Tammie

    • Zapamania
      Zapamania txmom4life

      Posted

      Hi Tammie you're right to work on patience.  You'll need to have it with this disease.  Testing, waiting for results, testing again and waiting and waiting.  It's a very rare disease, so many Drs are not too knowledgeable about it.  If there is any way you can see an MPN specialist, please do.  I took this advice and it was a game changer for me.  Please keep us posted. We'll be waiting patiently! Lol. Zap

    • txmom4life
      txmom4life Zapamania

      Posted

      I live in Texas and Scott & White is one of the largest hospitals. If I get positively diagnosed I will definitely do that. Thanks for the info!

      Patients with patience. Lol.

      Have a good weekend!

      Tammie

    • Zapamania
      Zapamania txmom4life

      Posted

      Tammie everyone I've ever seen online with Pv go to MD Anderson hospital. People even travel there from different states.  I don't know how close or far you are from there, but if things don't work out, keep this in mind.  I do know there are a couple of top MPN specialists there.  I live in New Jersey about 20 minutes away from New York.  I know the hospital and the names of the MPN docs there. If I get in a jam, I'm definitely going to NY.  Always good to have a backup plan.  Take care. Zap

    • txmom4life
      txmom4life Zapamania

      Posted

      Houston is my closest option. It's only a 2.5-3 hour drive. So it's doable.

      Thanks again!

    • peter98873
      peter98873 txmom4life

      Posted

      Hi Tammie,

      PV is not known as an hereditary disease and neither is it considered transferable.  Your father's illness may be from another cause other than PV, although one could never rule out a connection here, but it seems most unusual.  Prior to my diagnosis with PV I was advised on several occasions that my red blood count was above normal and it was not for several years that it was actually confirmed as PV.  This disorder is generally recognised as being the result of a defective gene (JAK2) at birth but is not usually prominent until later in life when it first becomes noticeable in people.  This can vary.  As you are probably aware, PV is a very rare disorder and many doctors are never confronted by a patient suffering this disease.  It is not surprising that any diagnosis can be deferred.  For three patients with PV to be presented at the same time is certainly exceptional.  It might be that one or two of these could be other than PV following tests.  It would be interesting to know.  As Zapamania has already explained, your upper quadrant pain is symptomatic of a PV related problem with the spleen, which acts as a filter for red cells and maybe with a liver or kidney difficulty as well.  Your scan will decide all of this.  These tests all take time so you should relax a little and wait until the results come through.  Good wishes.

      Peter.

    • txmom4life
      txmom4life peter98873

      Posted

      Thanks Peter. Had my ultrasound yesterday. It was more uncomfortable than I had anticipated.

      I don't think I mentioned that the doctor was also testing me for hemochromatosis. I've been reading up on it and I could possibly have it. It's a lot of the same side effects. I don't see a lot of info on the relation to the high RBC's with hemochromatosis though.

      Oh well. I'll have my answers in 10 days.

      Tammie

    • peter98873
      peter98873 txmom4life

      Posted

      Hi Tammie,

      Well it seems you have some movement forward in your tests.  You are quite right, wait until you know exactly what you are dealing with and then you can contemplete the way ahead.  It can be a bit of a drag waiting but all will be revealed in due course.  These tests have to be exact for everyones sake.

      Do not hesitate to ask your haematologists about anything that concerns you.  Good luck.

      Peter.

       

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.