2 years with polycythaemia vera

[EleanorPV]

2 years today i made that trip to a&e. I thought I had a trapped nerve in my neck. Turns out it was PV and my HCT was 68! I'm thankful it was spotted before a blood clot or another thrombotic event. I have educated myself (and everyone around me), at the same time enjoyed so much over the last 2 years. Let us all be thankful for the health we have. A special thanks to our wonderful NHS on her 70th year.

[Mica11]

You have certainly helped me understand lots since I was diagnosed last year and I thank you for that and the wonderful NHS and all their dedicated, overworked staff. Here's to keeping on an even keel for many, many years yet Eleanor. x

[EleanorPV]

Sorry. Yes my bloods are all very well controlled by pegssys. This was 2 years ago.

[Susana7]

Hi Eleanor, It has been 4 years for me since diagnosis, that also started with an A&E visit with suspected heart attack. It wasn’t thankfully but led to the discovery of PV. Like yourself, back to normal thanks to Pegasys and the wonderful NHS Haematology care. All the best to you, Susana x

[redumbrella]

13 years and counting Eleanor, my PV Jak2 neg was also caught by chance I was getting bleeds in the eye. Doing well so far with daily Asprin and Venesections two or three times a year.

Keep Eleanor

[JackLina in reply to redumbrella]

Oh, I had that such a lot. People commented but I just thought it was due to high blood pressure. Is that part of this MPN? I'm ET and JAK2. I need a glossary on this site to keep up with the acronyms.

[redumbrella in reply to JackLina]

I think that it was just the way that it manifested itself in my case Penelope not everybody would experience this.

Garry

[JackLina]

HCT?

[Tico in reply to JackLina]

Hi penelope, HCT,is ur hematocrit blood volume in ur red blood cells.Don't know if u received my message ystday regarding clopidogrel? I fell asleep while writing so i'm unsure but it woz just 2 reasure u that clopidogrel wud not be anyway responsible 4 ur et jak2+ wen i was diagnosed with et jak2+ after a tia, i was put on aspirin & hxdrea & went on 2 ave a more significant stroke in 2015, then i was taken off aspirin & put on clopidogrel & hu,& a lot of gps ready admit they ave not even heard of it, mine do's! Atb.tina

[Tico in reply to Tico]

Sorry penelope, i meant a lot of gps ave not heard of mpns,tina.

[JackLina in reply to Tico]

Thank you Tico. You must have fallen asleep. I'm pleased to learn clopidogrel wasn't the culprit because I'm quite comfortable with it now and cannot take aspirin.

Just want to add to the pruritus discussion, that I used Oilatum Bath formula in my bath today. Soaked for about 20 minutes and not suffering any itching. I had run out of it previously as it no longer is available on prescription but following my crazy itching spell, I bought some. It works......can't believe it. Obviously, I'm holding back on high histamine foods but my itching is minimal and non existent after the bath laced with Oilatum.

[Tico in reply to JackLina]

Thats gud 2 here about u getting sum relief ref itching! Atb tina.

[Ebot]

I’m trying to work out whether it’s appropriate to have an anniversary celebration! On the one hand I don’t believe for one minute anyone would celebrate having an MPN of any sort. On the other .... well it’s good to celebrate being alive, managing this disease, learning lots along the way and discovering this great Forum. And for those of us lucky enough to benefit from the best the NHS has to offer, celebrating that too. So I guess, i’ll send you a virtual bunch of 💐 and propose a virtual 🥂.