ET & Venesections

[TrickyDicky]

Hi

Does anyone with ET have regular venesections to bring their Haematacrit into range.

Thanks

[mhos61]

Are you on hydrea or similar for your ET? The reason I ask this is, when I was diagnosed with ET I had a raised haematocrit 47.9.

Because I was 60 at diagnosis, I was automatically put on hydrea, which brought my platelets into range, but it also brought my haematocrit into range (average now 41). I presume if I hadn’t been put on medication I may have needed phlebotomy even with a diagnosis of ET??

[Susana7]

Hi, high haematocrit is a symptom of PV, not ET. How was your ET diagnosed? Did you have a bone marrow biopsy? You should discuss your diagnosis with your haemo. If the HCT is high and platelets are also high, as often happens with PV, then venesections as a regular treatment are a problem as they lower the HCT but raise the platelets. I went on Pegasys (with great success) as had that exact problem! Susana x

[mhos61 in reply to Susana7]

Hi Susanna,

not sure if your response is to me or ‘Tricky Dicky.’

I’ve often thought that I might fall into the catagory of ‘masked PV,’ due to being on hydrea. However, I believe if you have ET with the ‘Jak2 mutation’ there can be overlapping symptoms with a tendency towards higher haemagloben/ haematocrit levels in some ET patients.

You are quite right to question this though, as I didn’t have a bmb at diagnosis, which is now a ‘Major Criteria.’ Maybe I should discuss the accuracy of my diagnosis at my next clinic appointment.

[Susana7 in reply to mhos61]

Hi Mary, since you both have a similar issue the response applies to both I was first diagnosed with ET myself but turns out I had masked PV with periods probably acting as natural phlebotomies. There is indeed some overlap as my MPN expert confirmed. But PV poses higher risks so the cytoreductive treatment became more urgent and the PV diagnosis provided the impetus for me to start Pegasys. Since you are already being treated with hydrea it probably won't make much practical difference to you. All the best, Susana x

[TrickyDicky in reply to Susana7]

Hi Sarah & Susana. Thanks for replying. In 2009 I was diagnosed with ET. Had a BMB at some point in 2010. At my recent consultation a locum haem said he wasn't sure that ET was an accurate diagnosis because of my need for venesections due to raised haematocrit since 2011. He did say raised Haematocrit was more typically associated with PV but he has also noted I don't have raised red blood count which he said is typically associated with PV. He's querying MF. I'm feeling anxious. Going to see an MPD specialist next and expecting that I'll be having another BMB in the not too distant future.

[Susana7 in reply to TrickyDicky]

I hope you don’t have MF! Even if you were to have it it would be early stages as your counts are still high. Do inquire about Peg when you see the specialist, it is thought to reduce the chances of progressing - and even reversing early MF. On the MF and the Interferon Facebook groups there are a few people doing very well on it! Best of luck to you, Susana

[TrickyDicky in reply to Susana7]

Thanks Susana7

[mhos61 in reply to TrickyDicky]

Good to know you’re seeing an MPN Specialist. At least you’ll be confident in their diagnosis. Do you know if you’re Jak 2 +, as there is more overlap with this mutation?

Keep us updated.

Mary x

[TrickyDicky in reply to mhos61]

Thanks Mary. I'm Jak2 positive. I have my first appointment on Wednesday next week. Will keep you posted.

[mhos61 in reply to TrickyDicky]

Will be very interested on update, thanks!

[Chaz1]

Hi, yes my husband diagnosed with ET following a BMB has regular venesections. If we lived outside Britain His HCT levels would push for him to be PV but under British guidelines he is ET. All his blood cells are raised. He is 48 & no thrombotic events so aspirin & venesections. They do work for him, he's due to go in 12 days for next one & I know he needs it as symptoms are bad. People give a lot of flack about can't be ET must be PV blah blah but ultimately its the treatment that counts. We are on second opinion which led to the start of venesections.

[TrickyDicky in reply to Chaz1]

Thanks Chaz1. I'm also Aspirin only at the moment and a similar age to your husband. Hope all goes well at his next appointment.

[Chaz1 in reply to TrickyDicky]

Thanks

[clubdino]

I've had ET for about 15 years now. I remember before I was ever diagnosed I used to donate blood and the techs would always make a remark about me having a high hemoglobin. Usually I was in the range of 17. (I'm female.) I did have a few years of high hematocrits when I was first diagnosed and it went away over the years. I'm CALR positive so that pretty much excludes a diagnosis of PV as far as I know. I am on another MPN message board and I recall another member with ET having high hematocrits and he got a BMB and was still diagnosed with ET. So yeah, you can have ET with a high hematocrit.

I thought with MF you have to worry more about anemia and not too many red blood cells.

[TrickyDicky]

Thanks clubdino.

[TrickyDicky]

Hi All

To update you. I met with the haematologist last week. He considers the diagnosis of ET to be correct. Said I'm somewhere on the spectrum between ET & PV. Clinically he doesn't feel it necessary to do a BMB but is willing to do so if I wished it. No change to treatment recommended either. I'm feeling very relieved.

Thanks all for your comments and support.

[mhos61]

That’s good news! Thanks for the update too.