at 18 age when i was first tested my HB by 17.6 ( before that i had not been tested)
last year it was 17.9 and 17.5 in two different tests.
i.e for four years my HB has been high. And I don't know if I had high HB before that ( never tested ) .
I have never done phlebotomy nor have I used blood thinner ever.
my EPO is 12.4
i am jak2 negative
my ferritin is low.
BP is fine.
Back in 2017 Ultrasound of abdomen was fine.
sometimes i feel headache, pins and needles.
( but very less), not really tired.
I am lean and also do workouts.
I have blacked out 2 times in my life.first when I was around 9 age and second around 17 age.( Probably beacuse of dehydration I don't really know). But blackout was momentarily only.
I dont smoke or drink
.
I have been a really good student and want a great future ahead but with uncertainty in my diagnosis I my me feel worst.
I am very anxious though.
Can anybody help ?
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Nama987
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Are you seeing a Hem? Preferably a MPN specialist? It’s important that you see someone you have confidence in.
Are you PV (as opposed to Polycythemia) and if so have you been tested for CALR and MPL mutations?
Has anyone checked your spleen size since 2017?
Finally are you scheduled for venesection and/or Pegasys/HU?
All of us here have been through the shock of diagnosis! Please be reassured that there is a vast amount of research ongoing and new drugs in the pipeline. MPNs have been a rather obscure disease in the past but this is now dramatically changing.
At your age your prognosis should already be very good but the above research should allow you to end up living a normal life.
Can you please clarify, are you Polycythemia Vera or Polycythemia?
I believe about 95% of PV patients are JAK2 + so you are likely to be Polycythemia?
I know very little about this but your EPO level is within normal? Yet you are anemic?
Has your doctor ruled out PV and if so, why? I’m interested as to what the diagnostic differences are between PV triple -ve (ie no JAK, CALR nor MPL) and Polycythemia, EPO levels aside.
Hi Paul, I’m confused, I always thought PV, polycytheamia vera, polytheamia, and, when I was diagnosed 13 years ago, polycytheamia rubra Vera, PRV were all the same thing? I understand the difference between primary and secondary polycytheamia. Have I missed something?
I thought PV is an MPN driven disease whereby ‘defective’ marrow produces too many blood cells. Polycythemia is when high EPO tells marrow to over produce. Hence marrow okay, just receiving wrong signals?
My understanding is that it’s better to have Polycythemia rather than PV which is progressive long term. Polycythemia should be normal life expectancy?
I don’t know if Nama987 is at an increased risk of stroke in view of highish HCT/RBC? I assume this just specific to PV patients if doctor relaxed.
My husband is jak2 neg & bmb negative for PV. bUT HIS HTC & hemoglobin is still high 1 year later. Htc 58 and hemo is 21. Smoker. Now cut back cigs & doing Phlibotomies .....They want to do another BMB. I just dont know what to think..scary . He is 59 and feels fine.
I think something like 95% of PV patients are JAK2 +.
I would ask your Hem whether the BMB is conclusive even if he is ‘triple negative’ re the other two common mutations - MPL and CALR. I think PV patients can’t have the CALR mutation.
Be interested to learn the answer! Please keep us updated. I think a second BMB is worth doing, especially if it’s your Hem’s recommendation.
I would suggest you get a referral to a haematologist. As you tested negative for Jak2 it is unlikely that you have PV, which is a good thing - the haemo will hopefully be able to explore further the reason for the high haematocrit. Best of luck, Susana
Hello, I myself do not have Polycythemia but my son does. He was diagnosed as PV 16 months ago aged 14. Do you live in the UK? I would strongly suggest that you should ask for a referral to a Haematologist to get some clarity on diagnosis. Without a confirmed diagnosis it will be difficult for you to come to terms and understand what it means to you for the future. I am a registered nurse and I myself found Haematology so complex to understand, there are so many different blood disorders etc. My son thus far is leading a very normal life, he is still at school, plays sportsal, though he does notice his energy is low at times and he is tired , due to now being iron deficient.He has school exams GCSE this year and is making plans for his future just like any other 16 year old.. Yes his life has taken an alternative direction in view of regular hospital appointments and pegysys injections and tendancy to bruise more easily but this has become a new normal. He does not wish to be defined by his diagnosis, yes it will always be there but he is trying to keep in control of his life as much as possible. You too should continue to lead as normal a life as possible but firstly try and get the correct medical advice through a referral to a haematologist.From my experience with my son, general GPs/ doctors have very little understanding of these complex blood disorders,especially when it comes to younger paients therefore it is so important that you understand your condition , it gives you greater control. Christine
It can be difficult to come to terms with the diagnosis. I struggled for some months. Still have anxiety about it now though not to the same extent. I would recommend you look at the MPNVoice website. there's a lot of useful information available, forums across the uk, and there may also be the possibility of having a buddy to liaise with and provide support. I particularly found the forums helpful and continue to go along every now and then.
Hello Nama987 et al, I was diagnosed with PVR in 1983 and thanks to medication and regular checkups with the haematologist team I am still living any active life. (I've just returned from a week's skiing and in August I motorcycled to Provence in South East France). Although it's a shock to learn you have some peculiar blood disorder, if you have the skilled haematologists to look after you, there is, hopefully, no reason to not having a long and useful life. I am now 72.
Get a second opinion and a referral to a haematologist and they should be able to find a cause, or advise you appropriately and prescribe the best medication for you.
Everyone is different and needs constant monitoring by experts. It helps to think positively and please plan for a good future.
Really inspiring and feeling motivated to see u that u have enjoyed almost 35 years with PRV and still helathy going on!!
Am not surely diagnose yet but may b secondary polycythemia or idiopathic erthrocytosis and am JACK 2 neg.EPO normal,bone marrow biopsy not suggestive to PV and platelates and WBC in normal range
Ur story is really motivated me for my upcoming life
If u dont mind will u plz share ur daily routing with PRV?
I am happy to share my routine to control my blood. About 9 years ago my blood condition changed to Myelofibrosis which happens sometimes with people with PV. I had my second bone marrow biopsy which proved the change, as the hydroxycarbamide did not seem to be working properly.
I am now on a tablet named Ruxolitinib which I have to take about 12 hours apart. I have one at 06.45 and the other at 18.45, or a little earlier if I am going to the theatre or cinema or meeting friends.
I usually get out of bed at about 07.15 and have cereal for breakfast with another two or three tablets. I have 1 Omeprazole to help reduce stomach acid, caused by too many dead blood cells, 1 Allopurinol tablet to stop the build up of uric acid and hence gout, because of too much waste in the blood and alternate days I have a 75mg aspirin to keep the blood mobile.
I try to keep quite fit by walking, cycling on my pedal bike in the summer, and being in the fresh air. I do not go to a gym.
I live a busy life, with a few voluntary jobs.
If you want to know anything else please let me know. I am interested in your diagnosis, and what you do and where you live.
Above all I offer my best wishes and all you to try to think positively.
Am from india and doing an engineering job.I had consistently high HB and High PCV since 5years but never increase in WBC and Platelates and RBC to.
I now just experiencing mild fatigue and did CBC and now my RBC also Slightly high.As you know am Jack 2 negative,EPO normal and bone marrow shows mild errthrocytosis but doctor said not suggestive to PV.
Please keep updated and am too with my ongoing diagnosis which is currently still undiagnosed!!
My husband is 59. We live in USA.Smokes a pack of cigarettes a day. 1 year ago this all started when he became flush in face and Shakey hands.Took him to hospital fearing a heart attack. They found nothing except that his hemocrite was 58 and his hemoglobin was 21.3. they referred him to a oncologist /hematologist at cancer center. Doctor started phlibotomy day 1. And husband had to get a jak2 test and bmb.Bone marrow biopsy. Both negative. So PV was ruled out. Doctor stopped the venisection phlibotomy s. They did get numbers more normal but doctor said since he smokes didn't want to keep taking blood because he needed more red blood cells to make oxygen.
So then we started with the VA.veterans health care system as my husband was in navy. Doc has done a CT lung scan .No cancer thank God. Also iron was 175. Now 80. Negative for hemotochromotosis or however u spell that. This oncologist doc is doing bi weekly phlibotomy taking 300. Out a small bag of blood. So far numbers still high . But my husband feels good! Not flushing since July 2018. His bone marrow biopsy did say check for mastatois mastiatosis ? Something about histamine allergies? But all doctors say no symptoms. So they say it's not that. So here we are. I'm scared it's a hidden cancer. He has lots of red blood cells and mast cells. He has psoriasis on legs..right now controlled by topical cream meds so itch stopped and scales. I keep wondering if psoriasis connection to this nightmare. It's 2019. All answers welcomed and your levels. Oh and his Trypase level is 55. Doc said should not be over 11 !!
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