Thought I had PV, maybe it's IE? Anyone with IE out there?

[meaboutthis]

Hi,

I have been told I have PV, or some variant of it as I do not have the JAK2 mutation or splenomegaly and the only blood abnormalities are RBC, HGB and HCT (when not been made to be anemic from phlebotomies to keep me under 42 hematocrit,)

I can't find much information on IE. Anyone out there dealing with IE who would like to share your journey and symptoms, etc?

Thanks,

meaboutthis

[Mich10]

Hello.

Sorry I can’t offer any advice as have ET and not heard of IE I’m afraid. Has your consultant/hemo been able to educate you on your condition? I hope you get some answers soon.

Mich🐾

[mhos61]

Hi, there is a contributor on here (Aime) that has been recently re diagnosed from a PV to IE. So, hope she sees this!

[idi75]

It stands for Idiopathic erythrocytosis. It means you produce too many red blood cells but the cause has not been identified.

[Aime]

Hi, I was rediagnosed with IE, idiopathic erythrocytosis back in November last year. My treatment hasn’t changed any because my blood thickens when I’ve too many red blood cells, so I still get blood tests about every 12 weeks and venesection as necessary. Unfortunately this does cause anaemia.

I went looking for an answer, got one but it has raised more questions because as you say there’s not a lot of info on IE as there seem to be no answers to what causes it. I think as research progresses, another mutation will come to light and we will get an answer.

In the meantime I’ve decided to keep as healthy as I can, drinking plenty of water and eating well (with treats of course)! If blood counts, etc change, then I will seek another opinion if I’m not happy with the answers I get.

Keep in touch as we seem to be in a small minority. Kindest regards Aime xx😺😺

[gerri007]

We are so new to this and struggling at the beginning to understand what PV is all about My husband of 71 years old tested PV JAK2 negative however, but then exhibits all of which you mentioned above (thick blood, producing too many red cells). He had 201 hgb and brought it down to 146. Is that the norm? This was only done as a result of having 3 consecutive phelbtomies. We are waiting on appts. with a Hemo and being followed by an Internist as well but we don't have any true fact findings as yet. I know I am getting ahead of myself here, but even after the 3 phelbotomies just under 3 weeks ago, he is just not the same person anymore. He is very very weak and struggles with his breathing and I have a feeling this is about to start up again.

Just looking for support, suggestions to ask the Hemo, what (if he has ET can we expect in the long term).

Thanks to all for this group and your responses.

[socrates_8 in reply to gerri007]

Hi Gerri & meaboutthis...

Until right now I have never heard of this interesting condition; idiopathic erythrocytosis, (IE). Sorry I am unable to offer anything other than moral support at this point. Sounds to me that Aime's advice is best to follow for the moment as she has been dealing with IE herself of course...

Might be worthwhile to try to do some independent study, as well... perhaps first start with your haematologist by asking them for further information etc...

Sorry I am not much help here but I really just wanted to lend some support as best I can...

There always seems so much more to this world of MPNs, hopefully as research venues continue to grow, new understandings will emerge for all things MPN.

Best wishes guys...

Steve

(Sydney)