Hello - I’m new here so thank you for letting me join - my name is Jason and I live near Camberley Surrey and I’m 56
I am awaiting a diagnosis of Polycythaemia vera (‘Polycythaemia vera ('PV')’) having been referred by a rheumatologist to a haematologist (Dr Neelakatanl) at Reading spire hospital due to concerns over my RBC (5.74) haemoglobin (175) and heamatocrit (0.54)
I have been previously struggling with aches and pain which I had put down to statin that I started 2 yrs ago - but other than occasional aches and pains over the years and gut problems like gastritis I have been pretty healthy (although have suffered from health anxiety)
I am now in melt down as when I look back over my blood results these figure seem apparent since 2003!
My haematologist is non committed at this stage but seemed less concerned but he could just be protecting me
My fear is I might have had this for over 20yrs without being diagnosed!?
My symptoms now that align to Polycythaemia vera ('PV') since October I started getting blurry vision mainly in morning and dull headaches in morning
This is now more persistent although I am drinking 4 pints of water a day which seems to be helping
I also get a bit of bone pain I think, cold hands and feet - a little itchy at times but not bad - but in last few days a discomfort/ pain under ribs on left - although the haematologist felt me and said he could not feel the spleen + I had an ultrasound about 9mths ago which was normal
I’m just so worried this has been untreated for so long and it might be too late??
I’m dealing with a different condition and I know there are others on the forum dealing with Polycythaemia vera ('PV') who I’m sure will be happy to help
Hello there @jasond, welcome to the forum. Reading your post makes me want to reassure you that you’ve come to the right place as many people here know exactly what you’re going through right now. I’m really glad you found the forum.
While you await a diagnosis I don’t want to bombard you with information, but keeping note of your symptoms no matter how big or small you think they are is a great idea.
In 2023 I was diagnosed with Polycythaemia vera ('PV') and it sounds like you’re being tested thoroughly like I was. I also had my spleen checked, as apparently they can start producing blood cells which enlarges them. I had an ultrasound to check mine.
After my diagnosis it suddenly made sense of the heart attack I’d had years before which was caused by a blood clot. My haematologist won’t say for sure whether it was an early sign of Polycythaemia vera ('PV') but it sort of makes sense to me as I was otherwise healthy and active.
While I’m not a doctor, I do have frequent blood tests and can see how my numbers have changed over time. My haematocrit is used as a gauge of how thick my blood is, my main risk with Polycythaemia vera ('PV'), and if it’s around 50 % (0.50) or less then I try not to worry as that’s around the normal range.
Itching and headaches can also be symptoms of Polycythaemia vera ('PV') and other Myeloproliferative neoplasms ('MPN'), but I’m wary of sharing further information about these until you’ve been diagnosed.
Perhaps reading more around the forum would be helpful, to see that there are many folks who live well with Myeloproliferative neoplasms ('MPN') with some adjustments and treatments. If you use the search box at the top or Related Topics at the bottom you’ll see many of us share how we get on with Polycythaemia vera ('PV'), Essential thrombocythemia ('ET') and other Myeloproliferative neoplasms ('MPN').
Do please let us know how the testing goes @jasond and perhaps prepare yourself for some waiting in between tests and results. Time to find some healthy distractions I’d say, and trusted loved ones to share with during this stressful time.
Hi Jason - I was diagnosed with Essential Thrombocythemia and then with Polycythaemia Vera last year. Its not uncommon for these things to go undiagnosed for a long time, and it is of course shocking when you are told out of the blue that you have a blood cancer. I also probably went undiagnosed for many years. However, most people seem to live pretty normal lives with these conditions. Hopefully your consultant provided you with lots of information about the condition and in particular to the treatment options, and signposted you to MPNVoice, a patients organisatiuon that has been supporting those of us with these conditions for many years now. The volunteers who run it are incredibly knowledgeable, and the online form is full of people who understand these diseases extremely well. They also run a buddy system where they will pair up the newly diagnosed with someone who may have lived with an Myeloproliferative neoplasms (‘Myeloproliferative neoplasms ('MPN')’) for many, many years. They also run in person conferences and forums where you can meet other patients and leading practitioners and researchers in the field. I found their support invaluable after I was diagnosed. I’m afraid that this site wont let me attach a link, but you can probably find them with a search. I’m not a clinician, but my understanding in general terms is that with current treatments for Polycythaemia vera (‘Polycythaemia vera (‘Polycythaemia vera ('PV')’)’) and Essential thrombocythemia (‘Essential thrombocythemia (‘Essential thrombocythemia ('ET')’)’) a delay in diagnosis is unlikely to have much effect on your prognosis, so dont get too stressed about that. The priority in treating these diseases is to minimise the risk of a stroke that arises from them. The normal treatment is to (in simple terms) reduce the stickiness of your blood with various medications. I live near Kingston, so if you wanted to meet up to discuss I’d be happy to do so.
Hello there @martin151, welcome to the forum, fellow Myeloproliferative neoplasms ('MPN') survivor. I’m sorry to read of your diagnosis/diagnoses—may I ask if your first diagnosis wasn’t accurate, or did it progress to Polycythaemia vera ('PV')? My initial diagnosis was borderline Essential thrombocythemia ('ET')/Polycythaemia vera ('PV') but closer to the latter after further analysis. It was all a bunch of acronyms to me at first so I’m glad it was clarified.
Sounds like you’ve settled into treatments and understanding what you live with, but I’ll just share the great Blood Cancer UK information about Polycythaemia vera ('PV') here in case it’s of interest: Polycythaemia vera (PV) | Blood Cancer UK
I find MPNVoice helpful too, including their conferences (“patients’ forums”), and will just share their website here for others reading your post and wondering about them: https://www.mpnvoice.org.uk.
Anyway welcome to forum @martin151 and thank you for sharing your experiences, it’s so helpful to read how others with these rare disorders get on!
It’s great to hear that it’s been some help. By all means reach out; I’m not sure if there is messaging on this forum as I’m new to it too, but I’m sure that we will find a way to chat or meet up.
Hi Duncan. My diagnosis was originally Essential thrombocythemia ('ET') based on an enlarged spleen, and platelets elevated to 490-590 ish. My Haematocrit levels were also elevated but I that wasn’t explained to me fully, or the diagnostic implications discussed. I was almost symptom free (I had a 16 year history of aura migraines and longer of achy pain in my left side that I’d put down to gastritis as I had some old history of that). I came under strong pressure to start Hydroxy which I delayed because the more I read about Essential thrombocythemia ('ET'), I didn’t see that my platelets were at a level that made it the priority I was being advised. I was also being sent for venosections that were reducing my HC, but that didn’t make any sense with an Essential thrombocythemia ('ET') diagnosis. In short I was losing confidence in what I was being told and the explanations I was being given. I eventually agreed to go on the Hydroxy, but sought a second opinion from an Myeloproliferative neoplasms ('MPN') specialist. They also though there was something not quite right with the diagnosis and quickly concluded that Polycythaemia vera ('PV') was the correct one. From there everything dropped into place and made much more sense. Of course the original treatment plan still works and my bloods are now looking pretty good, though my specialist consultant is now considering shifting me from Hydroxy to Peg because (like may of us it appears!) I have a fairly active lifestyle, spend a fair amount of time in the sun and am obviously slightly concerned about the elevated skin cancer risk with Hydroxy (and I’m interested in the reduced progression risk that may come with Peg). I was diagnosed about 18 months ago and am now 65, so still new to all this compared to all those 70 to 80 yr olds who were diagnosed in their 50s and 60s!
@jasond Hello Jason and welcome to the group. I was diagnosed with Polycythaemia vera ('PV') about two years ago. However, looking back over my medical records shows persistently elevated platelets were present in 2016. Going further back it is clear that I had undiagnosed Polycythaemia vera ('PV') for between 20 to 25 years. It hasn’t affected my treatment or made anything worse. You can relax in that respect.
As my consultant said, “Polycythaemia vera ('PV') is something you will die with and not of”.
My father had a related Myeloproliferative neoplasms ('MPN') and lived to a ‘ripe old age’ decades after initial diagnosis.
Glad to read that you are keeping hydrated. I found this makes a huge difference.
You’re most welcome @jasond, please don’t hesitate to share or ask what you need. The forum is here for you when your diagnosis comes through.
So interesting @martin151 that you were free of symptoms, that was also my experience which confused me as I felt like I was somehow cheating my diagnosis. My blood cell numbers were elevated after a nasty kidney infection but otherwise mostly normal. However a close relative had been diagnosed with Essential thrombocythemia ('ET') and I asked to be tested for gene mutations which unfortunately found a JAK2 mutation and here we are.
My haematologist tells me that if we’re over 60 at diagnosis or at high-risk of clotting due to a previous clotting event then we tend to put on treatment like hydroxyurea sooner. I was really hesitant to start it as I wasn’t keen to take chemotherapy every day with its associated increased risk of skin cancer, like you say.
My haematologist pointed out that hydroxyurea has been the main treatment for people with sickle cell disease for decades and research shows these folks don’t have a higher incidence of developing cancer, which sounded good to me!
You’re totally right about needing to be more careful with our skin when taking hydroxyurea. I find it really dries my skin out so I need to go through a whole moisturising routine every day, including using high SPF lotion. Keeping hydrated is a must now too, especially the day before phlebotomy—I find it helps make my blood drain faster and thus I can get in and out of phlebotomy within 15 minutes sometimes. But actually my skin is probably ‘healthier’ than before as I look after it better with all the hydrating! So thanks Polycythaemia vera ('PV') for that I guess.
Just wanted to say hey there @Lucky, always lovely to see you comment. Hope you’ve been doing well!
I have been doing well. Had to stop taking hydroxyurea though. Moved onto Pegasys, got used to it but then had to stop when markers for liver damage started to shoot up. Just started on Ruxolitinib. So far so good.
I’m sitting here watching masked singer (god knows why!) and my legs and arms are aching a fair bit- which seems to come and go - which is very worrying as not sure what stage things are at do you get that too?
Not much on TV tonight, we watched a DVD. Yes, I get some aches in my leg bones and pelvis sometimes. It comes and goes. Apparently this is where blood cells are produced, though I’m not a doctor so this is only something I read. I don’t worry about it but if anything like this bothers me I raise it the next time I see the consultant.
Glad to hear it’s going well with the ruxolitinib @Lucky, sounds like you’ve run the gamut of treatments, as it were! I hear good things about ruxolitinib, in fact didn’t we mention it before? Anyway, I’ll keep my fingers crossed it works better for you than the others did.
I’m doing well, thank you for asking. The hydroxyurea dose I’m on has finally stabilised my blood cell numbers so I rarely need phlebotomy anymore, and the fatigue I think I moaned to you about has faded away. I’m taking these as good signs. Long may it last!
Hey @jasond just wanted to say that I’ve also experienced aches and pains in bones and joints. I wouldn’t like to say what might be causing what you’re feeling as I’m unqualified. With mine I wondered if it was due to overproduction of blood cells within my bones, an aspect of Polycythaemia vera ('PV'), which treatment quickly came to reduce. I don’t feel any aches these days. I also had some historic injuries start aching again, like tendinitis and a nearly broken ankle. That also subsided after treatment began.
Again, please hold out hope that you don’t have these Myeloproliferative neoplasms ('MPN')! Would it help to call the Blood Cancer UK nurses? They really know their stuff and can offer medical information and other support at 0808 2080 888 and support@bloodcancer.org.uk.
I’d also say it helped me to share how I felt with loved ones in between tests and results. For me it made it feel less overwhelming talking it through with others. Of course, seeking information here is also a great way to manage worries.
. By all means reach out; I’m not sure if there is messaging on this forum as I’m new to it too, but I’m sure that we will find a way to chat or meet up.
do you get that too?