I was diagnosed with PV in late November after routine blood tests for my underactive thyroid and my constant bouts of extreme anaemia showed that my bone marrow is making too many red blood cells.
My doctor has given me no information and hasn't referred me to see anyone and said at my previous appointment (after I had to ask) that it's "stable" and didn't mention anything further about it at all despite me asking - all I got was a shrug and told I "don't need to worry about it yet"
The thing is the fatigue is unreal - I've been forced to reduce my working week to 16 hours per week and even that is exhausting me (but I refuse to reduce it any further and also refuse to take time off sick), I'm sleeping a lot but I'm finding I'm having a lot of nightmares and hallucinations (does anyone else experience this, or is it likely to purely be through anxiety?).
I get a horrible prickly itching all of the time, my face is always redder than my body (best way to describe it is I look like I've chosen the wrong shade of foundation), a often feel a crawling sensation on my skin, my periods seem to have gone haywire (much longer breaks between them and then a heavy period which makes the anaemia worse - although I am on Ferrous Sulphate regularly), my feet and ankles are terribly swollen, I have a dry cough at night (never smoked), I have awful pains in my joints (especially my thighs lately) and my blood pressure is sky high and not responding to Ramipril.
So sorry for the long post but I know next to nothing about PV and am really hoping someone can advise me on what's normal and what's not as my doctor simply won't talk to me about it - when I was diagnosed, I simply got told "You have Polycythemia Vera" and when I asked what it was, she smirked and said "Your bone marrow makes too many red blood cells" and that was it.
I know it's a rare blood cancer caused by a faulty JAK2 gene and that the trigger is often unknown and I also know that it can't be cured ......... but does anyone else find it adversely affects their blood pressure?
Also does anyone know where I can get written information about it to try and help my family and my bosses understand as right now, I'm alone going through this and I feel that people think I'm making it up.
I feel pretty depressed over it all right now.
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justdiagnosed77
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Don't apologise for the long post, sometimes it's needed just so you can explain your situation. You've asked a few questions and you'll get good reliable information at the MPN voice website (mpnvoice.org.uk/). I have PV also, and have quite a few of the symptoms you describe, although your situation is less straightforward than mine as you have anaemia too. I was referred to haematology as soon as my gp suspected I had PV. She organised a JAK2 blood test at the surgery and it was at the haematology department at the hospital that I was told that I have PV. If I were in your situation I would want to speak to a different gp to ask for a referral to a specialist.
Hope you get your situation sorted soon - you'll certainly get some useful info on this forum, really helpful people here.
Regards, Liz
Do yourself a favour.... get rid of the doctor and find another who understands this condition. You are the one going through this not your doctor and believe me it is a big deal as a patient....so basically tell him or her to go to hell
I’m really sorry to hear that you have been diagnosed with PV. I’m also disturbed by your negative experience with your GP.
It’s clear by your account that you are symptomatic which needs assessing by a haematologist. If you haven’t been referred to a haematologist demand a referral. Importantly, they will be able to asses your risk category; ie, high, intermediate, or low risk and act accordingly. This may involve phlebotomy and or medication.
I’m not sure about the blood pressure question. Maybe others can help? However, PV does make the blood thick, so it wouldn’t be unreasonable to consider that the heart has to pump harder, and maybe this could impact blood pressure in untreated PV, only my opinion!
As Lizk 1993 has already mentioned MPN Voice will provide you with all the relevant up to date information on PV.
Hi, definitely insist on a referral to a haematologist. Do you know your HCT levels? Mpn voice is great for info. Most PV patients don't take any Iron supplements as this encourages higher red cell count they have venesections to reduce cell levels which causes anaemia which is managed by your Haemo team. I can't remember the science behind it but hubby has to not have high iron or vitamin k food to help manage his. Are you on aspirin? I'd definitely ask for a referral & if they won't then you need a different GP. You don't have to be JAk 2 positive but it's more common. I sympathise with the impact of the symptoms but as you are symptomatic you should be seeing a haematologist regularly. Good luck and stay strong.
Hi you have great advice above. I just want to comment on your symptoms. I had the red face endless itch especially with use of water. I was referred to a dermatologist who knew nothing. Then a well woman blood test showed HCT 47 so I was referred instantly to a haematologist who did venesections over the next 2 weeks to bring the HCT down. These continued for some months. gradually I lost the red face. And the high HCT count. I guess the HCT had gone down to about 44. In hindsight my local GP was an expert but at the time didn't pick up on the symptoms. So the point of this in my case is that the red face alone indicates too many red blood cells and a need to remove them. Your first task is to get the blood results that the GP said indicated PV. That will give you important info and will also be a bench mark for the beginning of your PV treatment. He sounds (words fail me) so may be reluctant but you have a right to them and all further test results. I have mine on a spread sheet. 2nd task is referral to a haematologist. You can research them on line. I paid to go private and it was worth every penny. Good luck in whatever you decide to do. It's very difficult at the beginning but you will soon have sufficient info and action to reassure you.
Hi, you have already been given excellent advice by fellow patients. I would just like to add- as pv sufferer I have been taking iron recently it also take aspirin. This was recommended by excellent Heamatologist and I feel much better for it . I would ask to see a Heamatologist ASAP and MPN voice is fab . I felt similar five years ago but currently feel great .Take care 🙂
Hello everyone - thankyou so, so much for your wonderful support and advice - you've all been far more helpful than my doctor and I feel less alone with this now.
I shall make an appointment with a different GP at the practice and ask for a double appointment so that I can discuss my symptoms and ask for a referral without it being rushed into 10 minutes.
Thankyou all of you for making me realise that I'm not a freak and not alone - I wish each of you a lovely day today x
I think your GP sucks to be honest. You will find that many medical professionals you encounter have absolutely no idea about PV. I think everyone on this site has had to tell medical staff about their illness and some medical professionals do not like it that you know more than them! I find it strange that you are still on iron supplements as this is a definite no no with this condition unless you get extremely anaemic whereby a very short course of iron can be prescribed. Like everyone else has said, ask for a referral to haematology. You have the right to be referred to anybody so don’t take no for an answer.
I find this site invaluable and once I found it and the MacMillan Cancer site I stopped looking anywhere else. I hope you find all you are looking for here. Nobody knows more about your condition than those of us who are suffering from it so welcome to the club.
hello and welcome to our forum, I can see that you have been given very good advice so won't add anything other than to say, we are here for you, so do ask any questions you have and be very firm with your GP practice, let the doctors know that you are not satisfied with the way you were given your diagnosis and that no haematology referral has been made for you. Good luck, and let us know how you get on. Best wishes, Maz
And make sure they do the necessary testing, Insist on a bone Marrow Biopsy otherwise you might be miss-diagnosed. Secondary Polycythemia can look very similar to PV but the treatment regime is completely different.
I attended the MPN conference in London and found it most informative and extremely helpful.
Hello,Usually the next step when blood tests show Polycythemia Vera is a referral to a haematogist who will take the necessary steps to care for you. The usual tests then will likely be a bmb(bone marrow biopsy), jak2 gene mutation test and phlebotomies to lower your blood counts.
I knew that I had PV before the blood tests came back because I researched my symptoms online. A lot of people will say to not look online because it will scare you, but in my case, I wanted information and found it online.
I too had the red face, itching, night sweats, headaches, foggy head and high blood pressure. I now take a med for the high blood pressure, one baby aspirin a day and Jakafi. The Jakafi is the only thing that has controlled the horrible itching, and I have tried just about everything!
A haemotologist is knowledgeable about PV and the treatment.
Sorry to hear about all your troubles. Once you get to see a hematologist and get the proper treatment, things will improve. You never mentioned your numbers. I was diagnosed with ET Jak2 +, 11 years ago and PV about 2 years ago. I am also anemic. I don’t have all the symptoms you describe but I think that’s because I have been in treatment all these years. Please take care of this as soon as possible and find a new gp and a good hemotologist.
Many docs are not knowledgeable about PV and the other MPNs. it is a problem even with hematologists. This is a good resource for finding patient-recommended docs who have MPN expertise mpnforum.com/list-hem/ . I also have JAK2+ PV. Was in Stage 1 hypertension with spikes as high as 240/110. Once properly treated with phlebotomy, my BP went from average of 135/95 to 115/75. Hyperviscosity of blood is bad for BP! Prickly itching sounds like pruritus. Avoiding hot showers (aquagenic pruritus) and topicals (e.g. Eucrisa) can help with this. There are many secondary symptoms that can accompany PV. Some appear related to the over-activation of the JAK2 signaling pathway (note recent research re. JAK2 and inflammatory cytokines). Hope you find a knowledgeable doc soon. Meanwhile, as others have said - find a new GP too. Not referring you to a hematologist ASAP is inexcusable. All the best to you on this journey.
To begin - anaemia is good where PV is concerned - I can't understand how you were diagnosed with PV as PV is the very opposite of anaemia. Haems remove blood to make you anaemic... JAK2 doesn't make you anaemic. Go find yourself a Dr who knows what they're talking about. No Dr in their right mind would put someone diagnosed with JAK2 PV on Ferrous Sulphate. My Dr loves it when I'm anaemic - not great for me but hey, it keeps me 'healthy'
My second point - yes, I believe it can adversely affect your BP. I was diagnosed with High BP and SVT (heart murmur) back in 2009. I was a non-smoker, good diet, active and not over weight. Instead of investigating further I was given medication Ramipril and Verapimal. My blood pressure and SVT stabilised and I carried on with life.
In 2012 I had a Stroke - it wasn't a massive brain stem Stroke (thankfully) but it was life changing for a relatively fit and healthy woman. After 6 months I was basically forgotten about. Then 18 months later I got another big blood clot (this time in my hand) It wasn't good to look at but it caused no real harm. I saw a new GP who looked into my Medical History and realised there was something to investigate. Within a week I was diagnosed with JAK2 PRV.
To finalise - you really do need to find yourself a competent GP who will refer you to a Haematologist. Life is far too short to leave it in the hands of charlatans.
Welcome. You have been given lots and lots of wonderful advice so I will not duplicate information. I found myself getting quite upset by how you have been treated especially when just taking in the diagnosis is mind-blowing in itself. Many of us with PV can relate to the rosy complexion, itch, prickles, fatigue and the rest of the list however this is your pain and we are all individual in how we experience and deal with the symptoms and side effects. I would like to add encouragement and obviously can only speak from my own experience. My red face, Halloween eyes (especially scary after a glass or two of wine), itchy feet, fatigue etc all diminished greatly over time with regular venesections and eventually medication. I sincerely wish you well and really hope you can be referred to a sensitive and knowledgable haemotologist very soon and have the care you so rightly deserve.
It's such a relief to find people who understand and care.
I don't know my numbers - when I was told it was simply a case of me having routine bloods (I'd had full blood tests every 8 weeks since late September, so maybe it was obvious they suspected something but they never really explained what my tests were for - I naively thought it was to keep an eye on my thyroid levels and anaemia nothing more) and then I suddenly got a phonecall from my surgery and told I needed to see a doctor as soon as possible .
I actually got my diagnosis in the midst of a lot of other spiel she was telling me and had to actually say "Hang on, I'm sorry, what is Polycythemia Vera?" and she actually smirked at me as though she thought I was ridiculous and said "It's where your bone marrow is making too many red blood cells".
Prior to this, I'd already been told my body didn't make enough red blood cells after I almost died from anaemia in October 2012 and ended up hospitalised and needing a full blood transfusion and since then I seem to be anaemic more often than not and the original (nice) doctor who started all of my blood tests off, actually did say she was testing for cancer but didn't say much more.
You've all given me courage to actually stand up for myself - I've not managed it today, due to working an odd shift and now I feel exhausted, but I shall book a double appointment with the original doctor and also ask for my numbers as well as the referral - as a side note (feel a bit silly asking), does a bone marrow biopsy really hurt? I'm terrible with needles x
Hi! Glad you've been heartened by the wise advice given you by these many fellow travelers on this road! I have had 2 bone marrow biopsies (BMBs) and was put under quick sedation to have them, and so no pain! Just a mild soreness in the hip for a couple of days afterward. Good luck! I wish you all the best.
So sorry you have not had more support. You should be referred to your specialist haematology unit for care under a consultant. Interested to hear poor you have underactive thyroid and iron deficiency anaemia. I have the same problems but have E T.
Please return to GP s or you could phone your local haem department at the hospital and the team will advise you.
Thankyou - I'll see how my appointment goes on the 3rd of May. I'm anxious to get the right care now.
If it hadn't had been for this wonderful forum, I would have carried on plodding along thinking my doctors were doing the best by me - but now I know that's not the case.
I think part of the problem is my surgery is a practice and you often see a different doctor each time and that consistency of care isn't there.
I've specifically booked in with a doctor I totally trust, so fingers crossed x
Look forward to hearing how appt on 3rd May goes. It seems we get very varied responses, but you are right , by supporting each other, hopefully we can all make sure we get the best care possible.
Sorry late to the discussion but glad you have got more appointments sorted. Presume when you say anaemia its the iron deficiency and that your actual haemoglobin and/or haematocrit elevated with GP saying you are producing too many red blood cells.
Re the ramipril and your BP its really important to keep drinking plenty of water to help keep hydrated particularly if your red cell count is high. Hopefully the BP will get under control again once you've seen haem and ?had a venesection. to reduce the red cell count. Usual once that is improved some of the symptoms like the itching can improve but sadly the fatigue may continue. Glad you've managed to reduce hours. Don't be fearful of taking time off whilst you get things sorted with the PV. Its definitely worth holding off the iron /ferrous for a bit as that may be spurring your red cell count to increase further and cause you to feel even worse. Best waiting till you see haem about the iron. Good luck and keep us posted.
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