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Fluctuation of levels

Posted , 6 users are following.

julia15874
julia15874

Hi all, just a question to ask does anyone experience a fluctuation of levels, my levels slowly rose for two years reaching high levels in both heamocrit,heamoglobin and red blood cells, then out of the blue they dropped to almost normal levels, then out of the blue they gave risen again, not as high as before they dropped but my doctor seems more concerned now there's an unpredictability to my blood than before, I've now a horrible itching that has made my scratch so much I've made my skin bleed! I'm wondering if this is because it's up and down now? I've had no phlebotomies, had no change in diet or weight, nothing has changed to make a reason for this but I wondered if this happens to anyone else?

1 like, 20 replies

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  • Zapamania
    Zapamania julia15874

    Posted

    Hi Julia when I was first dx approx 4 yrs ago, I had the same pattern.  My platelets would go down as much as 400 pts.  No meds.  The next month they would go up 300 pts.  It went on like that for a couple of years.  I was told this disease waxes and wanes.  Eventually my platelets hit 1 million.  I was put on HU which lasted 3 days.  I couldn't tolerate it at all.  So I am now on Jakafi.  5 mg twice a day.  The side effects are much more tolerable for Me.  As far as the itching I only had it after a shower.  If it got bad, I would take a Benadryl tablet.  I've heard a combo of Zantac and Zyrtec work very well.  Ask your dr about it.  Good luck.  Zap

    • julia15874
      julia15874 Zapamania

      Posted

      Thank you I'm on a waiting game right now, I've to have two blood tests this month then another in Feb, my last blood test went down to almost normal from been high on it's own, I'm unsure my exact numbers for the last blood test but it's risen slightly, all my recent levels are above normal but not at a danger zone level, but they were in November, it's very strange, anyway I'll see how my next levels are and I'm thinking of seeing a MPN specialist in Hull if they have risen again otherwise I'll just see how things progress.

    • Zapamania
      Zapamania julia15874

      Posted

      Hi Julia if at all possible try to stay off meds as long as you can.  I was told it's essential to see an MPN. So I changed from an onc to an MPN  specialist.  They are much more knowledgeable and that's all they deal with.  It would be a wise choice to see one.  Zap

  • richard96620
    richard96620 julia15874

    Posted

    Hi Julia,

    Are you taking Hydroxeria ?, are you taking Aspirin? I took bothe the medication, an most of us know, every individual is different, I do not have any symptom or sickness, my platelet count is high, at 700, HCT is high, at 47.

    My doctor is an oncologist, I am living in Houston Texas. .....Richard

    • richard96620
      richard96620 julia15874

      Posted

      Hi Julia,

      Every individual is different.

      I am taking Hydroxeria with the intention to lower down my platelet count. I will check my blood in Feb 2017. Will let you know if the drugs works for me.

      Aspirin is a blood thinner, I take Aspirin as an assurance that my blood will flow more smoothly. So far I do not have bad symptom....Richard

       

  • keith28441
    keith28441 julia15874

    Posted

    Hi Julia

    With me, my red cells and platelets increased steadily over time. When Phlebotomy/venesection alone was no longer working, my Haematologist decided to put me on Hydroxycarbamide, which reduced my platelets from 708 to 123 in just 2 weeks. As a result of this, my Haematologist then stopped the Hydoxycarbamide for 2 weeks to allow my levels to recover a little. However, following this at Week 1, my platelets then increased from 123 to 211 but at Week 2 they went up to 988, which even I have to say totally surprised me. I am now back on the Hydroxycarbamide but my Haematologist has also put me on low dose Anagrelide now as well. My Haematocrit and Haemoglobin on the other hand are now very low, so my Haematologist has actually taken the unusual step of putting me on Ferrous Sulfate tablets in order to actually get my red cells back up to a near normal range as I am now anaemic. Apparently, the Hydroxycarbamide suppressed them too much too quickly.  I guess it’s a question of getting the medication/dosage right and in time they will settle down. We are all so very different in how polycythaemia affects us, but this is just my little story that I thought I would share with you.

    Take care & Happy New Year to you.

    Kind regards

    Keith

    • julia15874
      julia15874 keith28441

      Posted

      Thank you Kieth and a happy new year to you too. I've just received my last blood test today and my red cells had risen again, in November it was just above normal from been quite high, but my GP has noticed my white cells are going down while my red rises, my white is still within normal but my last test showed them at 3.5 (so just within normal low levels) and red cells at nearly 6.00 I've to have another blood test next Monday , I've had flu Over the new year so would presume that would have an effect on my white cells too and I've been left with a bad chest infection so I im not sure I should get my blood test done as it might be showing a wrong reading if I've had flu. I'm seeing a MPN specialist soon so I'm hoping to get answers. xx

    • Zapamania
      Zapamania keith28441

      Posted

      Hi Keith I just read your story.  That's amazing that your platelets went from 708 to 123 in two weeks and then jump to 988.  I've had a lot of rises and falls but nothing as drastic as you.  I did hit 1 million and was finally put on Jakafi.  I think I've dropped to 635.  Now that you've adjusted your meds what are your plates & hematocrit now?  And how long have you had Pv?  Zap

    • keith28441
      keith28441 Zapamania

      Posted

      Hello Zap

      988 was my last reading on Weds. I was due to fly to the US yesterday but my Haematologist wasn’t happy for me to a) fly with my platelets being that high and b) when I am able to travel, he doesn’t want me being out of the UK any longer than 2 weeks at present, which gives me a bit of a headache as I was due to spend a month out there and had some things that I needed to do. I have rebooked my flights for 17th January now and just keeping my fingers crossed.  I am currently under weekly observations at the hospital. I was only diagnosed with PRV in Feb of last year but my Haematologist believes I probably had the beginnings of it way back in 2010 but it was reasonably dormant at that time. I had many of the symptoms back then including terrible migraine with aura, fatigue, breathlessness and tinnitus but nothing showed up on my blood tests at that time. Instead, my GP put me on really strong meds to treat my migraines but the medication didn’t have any affect. It was only when the fatigue was becoming debilitating that I asked him if I could be checked for gluten intolerance and it was only then that the blood results finally revealed themselves. At that time my Haematocrit was 0.60, Haemoglobin at 20.3 and red blood cell count itself at 6.78. I am JAK2V617F positive. I was doing OK on just venesection/phlebotomies and taking a drug called Clopidogrel, (which stops the platelets from sticking) until around October/ November then my Haematologist informed me that this treatment alone was no longer an option and I needed to go on a Myelosuppressive drug. However, I was dithering as to whether to take it or not as he was suggesting interferon alpha because of my age. I didn’t like the sound of the side effects of this drug so he agreed to put me on Hydroxyurea, which I started on 1st Dec last year. Last Wednesday, having seen my latest blood  counts, he decided to also put ,me on Anagrelide in addition to Hydroxyurea in order to try to better control my platelets. So, I am sort of new to the use of Myelosuppressive drugs so I am thinking that this is why my levels are so up and down at the moment. Hopefully, they will get the medication/balance right and my bloods will stabilise over time.

      Take care Zap

      Keith

    • Zapamania
      Zapamania keith28441

      Posted

      Hi Keith we shouldn't fly with high platelets due to blood clots.  I think I had it longer than when I was dx.  I remember getting crazy itchy at night watching tv.  I used to wonder what is this? Mine was found when I had to have blood work for sinus surgery about 4 yrs ago.  My platelets were 491.  The rest as they say is history.  Hope the meds work for you.  Thanks for answering.  Zap

  • snoop_dog_123
    snoop_dog_123 julia15874

    Posted

    Hi Julia,

    yes I do also experience radical flucation. I have a rash on my leg that never goes away. It seems to flare up at will yes itches right down to the bone I scratch till bleeding. No rhyme or reason to the flare ups that I have found.

    hopefully yours will disappear never to return. 

    • julia15874
      julia15874 snoop_dog_123

      Posted

      Hi Snoop dog, I'm hoping that too, my doctor says it's just a wait and see thing with me at the moment, I'm just getting on with things, Have you got PV? Or polycythemia? I was never conclusively diagnosed. X

    • julia15874
      julia15874

      Posted

      Sorry Snoop dog, I've just seen your previous post about you having PV, the thing is my heamotologist has said that PV can fluctuate due to how your bone marrow works, but usually polycythemia doesn't unless you find the secondary reason. I'm just getting on with things and monitoring my blood, if I start going dizzy again I'm pretty sure for me that's a sign my bloods high again. Thank you x

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