Recent diagnosis of PV

Hi everyone, hope you’re all doing well. I am 49 years old and have been diagnosed with polycythaemia vera back in December 2023. Needless to say, it was terribly shocking and stressful for myself, family and friends.

My husband and I are both healthcare professionals working for the NHS. You can imagine our shock as we found out that my bloods have been deranged since 2014 (I take annual blood test due to my idiopathic hypertension). As you know, we are not allowed to look at our own or our family/friends’ medical records. I’ve been seeing the same GP since 2014 and she never flagged my consistently high platelets etc. Whenever I call the surgery to ask for the results of blood test, I was always given the answer “It’s all satisfactory and no need for a consultation.” I’ve also been to the same GP a few times to ask about my urticaria/rashes when I shower, and chronic fatigue and shortness of breath. I was just given cetirizine for the rashes, and the explanation for the fatigue and shortness of breath is my weight gain. This is clearly a case of missed diagnosis. It was only when I was seen by a new GP last July that I was urgently referred to the haematology consultant. He was absolutely surprised that no one has ever informed or referred me to secondary care. We are all familiar with the NICE Clinical pathway in referring patients with abnormal platelets.

Has anyone had a similar experience of having been diagnosed late with Polycythaemia vera (PV)?

I’ve had a chat with one of our friends who is a Stroke Consultant, and he said sadly, some GPs are not that familiar with Polycythaemia vera (PV) (or other blood cancers) that it is sometimes just diagnosed in secondary care once the patient has had a stroke.

I was prescribed aspirin once a day, and initially advised to just “wait and see” by the first haematologist that we’ve seen. However, we do have the advantage of different medical perspectives and we decided to seek a second opinion. I was then referred to a haematology professor who specialises in MPNs, and was advised to start on pegylated interferon alfa-2 treatment.

Anyone else on peg-interferon, and any side effects that you’ve experienced?

I had horrible back pain with it on week 6, that they had to temporarily stop it. I could hardly walk, sit or move - which was very distressing as I am very familiar with symptoms of cancer mets, and this was one of them. Fortunately, the MRI scans ruled out skeletal causes so it was thought that the pain was caused by the treatment. They have since restarted the peg-interferon, and I’ve been on it for almost 9 weeks.

I’m looking at going back to work soon. Feel free to give me advice on going back to work, with weekly peg-interferon therapy. Thanks for reading this.


Hi @Watts I have responded to your other post, take lots of care

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Good afternoon @Watts, and @Erica, hope you are both as well as can be. I have a different Myeloproliferative neoplasms (MPN) to you as I was diagnosed with Essential thrombocythemia (ET) just over 6 years ago. I had suffered a heart attack 6 months earlier that was potentially brought on by my elevated platelet count. At diagnosis my platelet count was over 1200 but is now down to a more acceptable, but still high, 400+. I have been on Peg-interferon since Apr 2018. My side effects mainly consist of fatigue, feeling the cold, pain in my extremities and flu like sniffles for several hours after each Pegysys injection.

I still manage to work full-time (out of necessity!)but beyond that my “free time” is taken up by resting and occasional outbreaks of Domestic Goddessing and trying to keep my bachelor pad clean and tidy, just in case! :rofl:

Regarding the injections themselves, it still feels unnatural to be sticking pins in myself and I feel that I want to close my eyes as I do so, but also know that I need to watch what I’m doing too!

Life is what happens to us when we stop looking!

Take care and stay safe all.