I am in the process of undergoing a full work up for possible PV. I have had three CBCs in the past 6 months with HGB values ranging from 16.3-17.8 and HCT from 49%-52%. I also have a CBC result from 12 years ago with a HGB of 15.8 and HCT of 49%. My platelets and white blood cells are well within the normal range. I remember being a teen once as well and a doctor telling me I “have a lot of blood.” I also have many of the tell tale symptoms of itching after a shower, fatigue, dyspnea, and random headaches.
I was wondering if this sounds like anybody else’s story. Does this typify the slow progression of PV? I worry about the long term risks of taking some of the chemotherapy drugs for someone my age (36/m).
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That is my understanding as well. Seems like initial treatment will be phlebotomy which doesn’t worry me too much although my ferritin is a bit low at 67 so not sure how I will tolerate it. I guess my concerns about interferon are that the side effects can be quite brutal leading to a high dropout rate.
My guess is that your haematologist would be keen to bring your HCT levels down to somewhere around the magic 45.
You’re right, first line intervention would be venesection. With any luck, these will bring your counts under control pretty quickly and you’ll then just need the odd maintenance venesection. Also, chances are, your symptoms will disappear or improve. I think you’ll find plenty of stories here of people sensing when they need a venesection - headaches, general muzziness etc. Certainly that was my experience.
However, if you do need drug intervention at some point, bear in mind that the overwhelming majority of patients tolerate the meds very well and they can impact dramatically on counts and symptoms.
And aside from that, understanding of the disease and the development / application of new drugs and disease management is evolving at an incredible rate. So, who knows what you’ll be offered in the next few years, let alone in a decade. Lots of reasons to be positive! Keep us posted.
Don't worry about taking chemo medication my husband was so frightened he started on hydroxy for his PV and he had no side effects at all he always took his hydroxy at 6pm .
His PV has progressed to MF early stages he's now on ruxolitanib and again no side effects at all he is managing a lot better on ruxolitanib. It's eased his exhaustion don't get me wrong he still gets tired but he works full time and has a stressful job .
Hi, I am currently in a similar situation (34/M) and under the care of a haematologist. I presented with a HGB of 18.2 and 52% HCT, JAK2 was neagative.
Your next step would be to have a JAK2 test. From my understanding and having spoken to my haematologist people with PV rather than secondary polycythemia tend to present with higher HCT and HGB levels than just over the norm. HCT and HGB continually rise due to overproduction of red blood cells rather than settling at a level towards the top of 'normal range'.
It's likely you may be advised by your haematologist to have a venesection to bring your levels to within normal range.
Shouldn't be too concerned about drug intervention just yet as it may be that your levels can be controlled by venesection alone.
Are you dehydrated? Some, if not all of your, symptoms could be caused by not taking on board sufficient fluids. Make a note of every drink you have per day over a period of a week if you are averaging less than two litres per day then you need to increase your fluid intake.
Dehydration is proably the most common cause of secondary polycythaemia.
Thank you so much for all of these informative replies. This really is a wonderful community and I am glad to have found it. I am answering some of the questions here instead of replying to each post individually.
I did take the Jak2 test and requested they also compute the allele burden. This may take a couple of weeks so it’s going to be a LONG wait.
Dehydration could explain my raised scores and fluctuation but I wonder if it’s still dangerous to have these high levels even if not due to PV.
I realize I may not present with the most alarming of numbers compared to other posters but I think the raised levels in combination with the fatigue shortness of breath and itching after shower are what really concern me. I realize the Jak2 test is really what will inform how we move forward but needless to say I am a bit preoccupied.
I had to wait a massive 10 weeks to receive my JAK2 test results so I can certainly relate to the anxious feeling of being in limbo! To rule out the dehydration potential, if you haven't already it could be a good idea to book your next blood test later in the day.
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