Hi im new here and just after some patient experiences. I started my drs visits just over a year ago after noticing a Petechia rash that was getting worse, I was also exhausted. I had lots of blood tests but Doctors said nothing significant wrong. Over the last year I have been getting worse and the Petechia is spreading all over my body, plus I have lots of random bruises and bleeds under my skin and the exhaustion has got worse. Ive had more blood tests since December 23 and they show High Hemocrat and High Hemoglobin, then In April low Folic was dedected and I was put on folic acid but the blood smear showed anemia. I have had a JAK2 test which was negative and recently my Erythropoietin came back as Normal (albeit it Low normal at 7.5). I have most of the symptons of Polycythemia Vera, itching after hot baths, drenching night sweats, exhausting etc etc but now these two tests have come back negative I am assuming they will rule out PCV? I have now been refered to a Haematologist and am waiting what they say but I am curious if anyone else has experienced a similar issue and what it turned out to be. Many thanks
A great big welcome to our forum @fifibaby and I think the not knowing is always scary and waiting even worse.
I have not experienced your symptoms, but I hope someone will be able to help you.
Often our symptoms are very generic and quite difficult to diagnose, so the tests that you have had so far are to rule conditions in or out.
Let’s hope the haematologist will be able to clarify thing further for you.
Please do let us know how you get on and really look after yourself. Thanks so much for posting.
Thank you you are so right the waiting is so hard. As I said I started this Journey a year ago. Hopefully it won’t be too long to hear from haemotologist. I appreciate your kind words.
Hey there @fifibaby, welcome to the forum. I’m really sorry to read of your understandably worrying experiences and ongoing fatigue.
I can empathise with much of what you describe as I found out I also had a high haematocrit level and other blood-related health concerns, but only after being diagnosed with Polycythaemia vera (PV) last year. This was after seeking blood tests via my family doctor.
The worry alone is exhausting, right?! For me it can become a bit of a vicious circle as the fatigue tires me out and then I worry and that tires me out some more and repeat…
Since diagnosis I’ve learnt about Polycythaemia vera (PV), its evil siblings like Essential thrombocythemia (ET), and its overall Myeloproliferative neoplasms (MPN) group of blood cancers. This has shown me that we are all different and come to these diagnoses via the various symptoms we might have lived with for years and how the symptoms currently present. Sometimes, like me, we’re diagnosed without any obvious symptoms. Other folks survive clotting events and the blood cancer is discovered after. However, treatments for these MPNs tend to be similar.
You’re right that being positive for the JAK2 gene mutation usually means we have an Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV). Not everyone with Polycythaemia vera (PV) or Essential thrombocythemia (ET) has the JAK2 mutation though. Most do—sadly over 90 % of people with the JAK2 mutation have an Myeloproliferative neoplasms (MPN). But there are dozens of other less common gene mutations that are found in those of us with MPNs. So you could have an Myeloproliferative neoplasms (MPN) but no JAK2.
Sorry to read about the petechiae, itching after bathing, night sweats and exhaustion. These can indeed be due to blood cancers like Polycythaemia vera (PV), but can be caused by infections and other ailments and in the case of petechiae sometimes even just from coughing, so it’s worth making sure your haematologist know about all your symptoms when you speak. Take along notes about any and all symptoms you’ve experienced, irrespective of whether they fit diagnoses you’ve read about.
I’d say don’t google MPNs but it sounds like you’ve had a year of waiting and wondering so of course you’ve looked this stuff up! Bear in mind that there is a lot of outdated information online that isn’t necessarily correct or even up to date. I’ve tried not to look up my Polycythaemia vera (PV) prognosis as I quickly learnt that much of what’s online relates to older patients whose prognoses are different to people who are younger, for example. Maybe instead you could read the Myeloproliferative neoplasms (MPN) research that Blood Cancer UK has shared which I find helpful and informative: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Something that might be a relief is that once you’ve been diagnosed and treatment is figured out, the symptoms you live with will be addressed. My Polycythaemia vera (PV) treatment has been daily aspirin (to thin my blood) and hydroxyurea (to disrupt the overproduction of blood) and occasional phlebotomy (to remove excess blood). This initially brought on fatigue that was pretty disabling but this faded with time. My haematocrit is now usually in the normal range, so there’s less risk of clotting.
So I’d say, while you’re in this Schrödinger’s cat scenario of being both negative for blood cancer but also maybe positive for blood cancer, try to remain optimistic that it could be something entirely different. Your haematologist will help you figure out what it is you live with and choose what treatments will best suit you, if any are needed.
And if I may share some personal optimism, I thought being diagnosed with a blood cancer like Polycythaemia vera (PV) would be the end of my life or that anxiety about it would be too much, but actually it’s come to be tolerable and I feel grateful to have found it before even worse side effects could have happened, like a clotting event. Life continues, and actually Polycythaemia vera (PV) doesn’t have to shorten my life.
You’re in the tricky part right now of waiting and not knowing so try to not let it take over, easier said than done I know! Have you got loved ones to talk it through with? Now would be the time to lean on those you trust. Take someone with you to appointments so you can both take notes. Keep us posted, @fifibaby about how it goes with the haematologist. Wishing you all the best!
Hi everyone thanks for your kind messages. Well PCV as been completely ruled out by hemotology now which is positive news, however the Hemotology team here in Swindon do not want to see me and have just put the spreading petechiae and bruising, night sweats etc down to smoking!! Im not impressed at all and neither is my GP who has now referred me to the Hemo team in Bath and asked them to see me. Im obviously relieved it is not Blood Cancer but my concern is no specialist has actually looked at the Petechiae rash wich is spreading rapidly to every part of my body and that doesn not happen with no reason. I know you can have Petechiae without a cause but it is usually in one place and goes after a few weeks/months, whereas mine is getting worse.
So another waiting game for me to see if the new team will see me.
I wish everyone on this site all of the best and am sending you all positive thoughts and kind wishes.
Hi @fifibaby positive news in one way but does not solve the problem. I am glad that your GP has made a referral for you.
I hope you get the answers and solution that you need and please do let us know how you get on.
Really look after yourself, waiting and not knowing are horrible.