Update

[Aime]

Hi All, just a quick update on my anaemia v erythrocytosis carryon! After 3 weeks of iron, I ended up with an HCT over .45, so was told to arrange a venesection which I did. Blood test 3 weeks later confirms HCT down to .37. Back to square one with tiredness, sores in mouth, etc for anaemia but I suppose my fault for asking for iron.

I know many of you have faced this juggling act many times but wondered if had found any other solutions to stop this ping pong game? Perhaps the venesection should only have taken 1/2 pint of blood or I should have only had 1 week or 2 weeks of iron? Any thoughts/experiences are very welcome.

Kindest regards Aime x😻😻

[ainslie]

AimeIf you have PV and are not on meds to control it then taking iron and venisecting is very tricky if not impossible.

When I was on venisecting only I could not tolerate the full 450ml veniections so after consulting with Clair Harrison 10 years ago she wrote to my local Haem suggesting smaller more frequent venisecting so for the next 6 years I would venisect 125 to 150 ml. And it kept my Hct steady at around 43, this worked much better but eventually my iron deficiency increased to the point my MCV dropped to 56 which I found hard and now I am on Ruxolitnib and no iron deficiency.

When I asked my local Haem initially in 2011 if I could venisect smaller amounts she said it wasn’t clinically practical ie they have had to venisect me every 4-6 weeks instead of every 3 months, however it it did become “clinically practical” when the expert wrote to them.

The other critical thing I did was to have blood counts checked at my GP every 3-4 weeks, if my counts were up a bit I then booked a venisect ion, test at the same time of day and make sure your hydration level is consistent, it took a bit of persistence to get my Haem to trust me on monitoring my own counts and then booking the venisect ion, I would tell the hospital the amount of venisect ion ie 150 ml or whatever. I felt much better on that regime for a long time. Some hospitals like to test a blood sample during or after venisect ion, this is wrong, if they want to test you before a venisect ion it is best do a separate normal blood test before the venisect ion. If you need more info on above feel free to as me.

I hope that helps.

[Aime in reply to ainslie]

Hi Ainslie, thank you for your speedy reply. My diagnosis changed from PV to polycythaemia or idiopathic erythrocytosis, which I understand is too many red blood cells but I’m negative to Jak2 and Xeon 12 genes. The basic treatment is the same however and I really don’t want to go down the road of taking meds.

I did wonder about whether they could take less off at venesection and your reply has answered that, thank you. My issue was the last time that my ferritin and hematocrit were low and started going lower but after some extra screening, etc, there was no obvious cause for it. However, my level of fatigue was bad and I think it’s heading that way again. However, I don’t want to take iron too early on, in case I ping back to too many red cells yet again.

I personally believe there are known or unknown genes which I have not yet been tested for and I will eventually have another re-diagnosis of PV, but I’m no medic! I have quite advanced osteoarthritis in many joints so these symptoms clash with the idiopathic symptoms. I’m on the MPN Merry Go Round again! It was just a poem I wrote and posted ages ago about how I was feeling. It seemed to strike a note with a few on this forum.

Kindest regards Aime and thank you again.

[hunter5582]

Bouncing between iron tabs and venesections is not a good way to go. The chronic iron deficiency from the venesections got so bothersome that those symptoms were as bad as the PV. That is why I opted for PEGylated Interferon. It is working great. Iron levels are coming up and my energy levels are getting better. AT 45mcg/week it is controlling RBCs and platelets and no adverse effects at all.

Hope you find a better solution soon.

[Aime in reply to hunter5582]

Thank you, Hunter. I’ll have to discuss with my private haem, I think as I feel sometimes that the NHS ones, although very nice, regard my diagnosis as not so important because I’m negative to the two common genes. I do realise I’m possibly better not to have PV but my symptoms are just as troublesome. Glad to hear that you have found a solution and that you are starting to feel the benefits of it.

Kindest regards Aime x😻

[EleanorPV in reply to Aime]

The haemo should be trying to help your symptoms. I had very similar disabling fatigue with venesections and anaemia. My fight for pegasys gave me a will to live.

[Aime in reply to EleanorPV]

Thanks Eleanor. Hope you are keeping well.

I just I’m getting almost dismissed a bit when I speak to nhs haematologist regarding fatigue. I think not seeing them face to face this year or last was definitely a disadvantage. You know which hospital I’m speaking about. I will wait into the new year and maybe speak to Mark Drummond again because he listens to what’s being said. I’m hesitant about going on more medication. I take enough for my other ailments but I’m starting to drag my feet again now.

Take care, have a safe and happy Christmas, Aime x😻

[Skyehope]

Hi Aime!

Sorry to reply so late - I'm not on here often. My haematologist agreed that I could take an off the shelf child size supplement of iron every second day when I was having trouble with the effects of low iron with venesections. It seemed to give my body a bit of what it needed without overdoing it.

Might be worth a try?

I hope you feel better and find the balance soon - it is incredibly tricky and sometimes still comes down to pure luck!

Take care,

Tracy xx

[Aime in reply to Skyehope]

Thank you, I will ask if I can do that. Kind regards Aime x😻

[Inca in reply to Aime]

A late reply Aime,just looked thru the last few days,so sorry you are still betwixt & between. I never have venesection even when my H C T is over 50 .I think it's because I have a stent,thanks to P V,& also my consultant is always concerned that I am slim ,skinny legs & arms ,sure he thinks I will disappear.I did have them when first diagnosed & became very weak afterwards......so it's a strange thing I really hope you soon pick up.e hugs ,best to you.😻❤️

[Aime in reply to Inca]

Thank you Sally. I’ve definitely not got a thin problem!🤣😻hope you are as well as possible. Aime xx😻😻