The forgotten minority

[DoubtingT]

There seems to be a lack of Research into what exactly is wrong with the very small minority of PV patients who come back Triple Negative to any of the known mutations ! I was diagnosed as having PV 4 years ago on the strength of a High Hgb/Hct and a low EPO, after a multitude of tests which all came back negative and basically showing non of the usual symptoms, my specialist has basically given up looking ! How many of us are there out there and is anybody interested in confirming whether it is PV or a different presentation of SP ?

[idi75]

I’ve had triple negative Polycythaemia for over four years. I have a FBC every four months and am just treated by a venesection every 9 to 12 months to keep my PCV below 0.45. The only adverse result is a very low ferritin level which may or may not be the cause of my fatigue. My consultant thinks It’s more likely to be Secondary Polycythaemia without any obvious cause yet becoming apparent. Like you I don’t have any other symptoms, for which I’m grateful. My EPO was normal. I’m pretty relaxed about it as it doesn’t cause me much inconvenience. I’ve had a couple of surgical procedures and do have to warn the consultant that I have Polycythaemia just so they are aware that there maybe a slight blood clotting risk. I don’t think research will be done for us few when Secondary Polycythaemia needs the cause to be identified and treated and the patient is otherwise well.

[DoubtingT in reply to idi75]

Great to hear idi, Unfortunately for me my Haemo' diagnosed me with PV, so I was unable to get Insurance for the last couple of years of my working life ie No work !! After a lot of research I am beginning to suspect it is being caused by my allergies, I break out in Hives regularly and apparently there is a link between Inflammation and EPO. I have just persuaded my GP to refer me to a different specialist. I will keep you posted.

[Aime]

Hi, I was rediagnosed with idiopathic erythrocytosis which means I have too many red blood cells but they don't know why. I may be totally wrong but I suspect one day someone will discover another gene mutation which will then mean we are re-classified as having polycythemia. As long as I'm monitored and venesection when necessary, I'm happy to plod along as it would be the same monitoring/treatment if I had polycythemia. Kind regards Aime xx😺😺

[DoubtingT in reply to Aime]

Hi Aime, I am a little bit confused, you say you have Idiopathic ET which in lay-mans terms is blood condition producing high red cell mass with Unknown cause, You then imply that you don't have Polycythemia (Primary or Secondary) ? I was always under the impression IE was SP (with unknown cause), has anybody explained a difference ? What was your first diagnosis SP or PV ?

[Aime in reply to DoubtingT]

Hi, I was originally diagnosed with PV but after second opinion I was re-diagnosed because I was told I was both jak2 and jak Xeon negative so I couldn’t have either Polycythaemia. I must admit I’m getting more confused again myself with folks on the forum getting told different things by their haems.

Perhaps it would be a good idea if Maz could ask (please Maz) Prof Harrison for advice as she definitely knows what she’s doing. Kindest regards Aimexx😸😸

[DoubtingT in reply to Aime]

See Table 1 in

ncbi.nlm.nih.gov/pmc/articl...