Iron deficiency and PV

[Ebot]

Hi. I'm new to this Forum and am reassured to see that others are as confused as me about living with an MPN!

My question relates to iron deficiency and PV. There seems to be a dearth of information out there!

I was diagnosed with ET about four years ago. The diagnosis was revised to PV last Autumn. I'm under the care of the excellent team at Guy's Hospital. I've been having venesections about every six weeks and remain on aspirin every other day. My platelet count is around the 1250 / 1300 mark. As a result of the venesections I'm very iron deficient (NOT anaemic). Consequently between the ID and PV I'm feeling a little short of my usual vim and vigour (understatement!). I take 200mg of ferrous sulphate daily. Obviously the usual rules of resolving iron deficiency do not apply. Does anyone have experience of this? Symptoms? Management? Resolution?

I get the impression that I'm somewhere between a rock and a hard place: put up with the effects of the ID or embark on drug treatments (which may or may not alleviate the symptoms of ID and will certainly come with side effects of their own). Neither very attractive options and am keen to keep drug treatment at bay for as long as possible (which I am sure is the Prof's view). All experiences and suggestions gratefully received. Thank you!

[rubyrubyruby]

Hi. I am having a similar experience to you! Diagnosed with ET 4 years ago but changed to PV last year. Venesections roughly every 6-8 weeks and on aspirin. Platelets have been around 800 for last few years but then peaked at just over 1000 last October, but now dropping, and at last appt 4 weeks ago they had dropped to 600. I'm under Guys too!! At last appt, comment was made that my Rbc were small and this may be a sign of iron deficiency, so at next appt they will test for iron levels. I suffer from fatigue too.

[Ebot in reply to rubyrubyruby]

Great to hear from you! MPNs can be such an isolating experience especially as there appear to be no established 'pathways' and everybody seems to progress in their own individual way. My platelet count does not seem to be heading south in any significant way. It had been stable at around 1000 for a number of years and then climbed significantly before a second BMB confirmed PV six months ago. The HC level appears to hover on the boundaries at each visit. I've now had four or five VS. The young registrar started discussing drug treatments in earnest on my last visit (very keen on Interferon). I was really taken aback and had a bit of a meltdown. Prof's view when she reviewed my results was to carry on as before. I think probably best the 'devil you know' rather than the 'devil you don't'. But it has left me feeling frustrated (anxious and upset!) at finding myself in a not altogether desirous place and wondering how I got here. I do wonder if I will ever feel really fit and well again. (I'm in my mid fifties and have young teen kids.) Anyhow, I'm coming round to the idea of learning to live with it but it would be good to DO something and feel as if I can take some control back - and feel better in the process.

[jane13]

very similar situation to u 10 years ago. Went onto hydroxy at the advice of my consultant. he said that because of my venesections I was making abnormal cells which were more likely to be sticky and clot. So take hydroxy and have fewer venesections. I was keen to avoid any stroke risk so went onto hydroxy. The fatigue increased over the decade until I went onto Ruxolutinib, but whether the fatigue was the drug or the low iron or the PV: who knows? Difficult decision but if u and the prof think the same then probably a no-brainer about drugs. But so far as I know u can't do anything about the fatigue other than healthy living!

[revfee]

Hi, sorry to hear you are feeling so tired, that fatigue is so hard to deal wth isn't it? I've had PV for 29 years and been on HU for most of that, so have had less venesections than many others here. But for the last 2 years I have had low ferritin levels so am 'anaemic' even though my Haematocrit remains highish. I had a short trial of very low dose ferrous sulphate, unfortunately my haematocrit shot up so it has now been stopped and HU increased

No great wisdom to offer, though I work fulltime plus so if anyone has any ideas for the fatigue I'd also love to hear them. Good luck Fee

[harleydavidson]

Hi Ebot

I have had Pv for 14 years and suffer with dreadful fatigue. My ferritin level is between 6 and 11. I cannot take iron so I make sure I eat loads of green leafy vegetables, red meats at least 3 times per week and high iron breakfast cereals also eat liquorice when I feel really bad, always eat or drink with plenty of vitamin C, as this helps you to absorb more iron. Drink loads of water too. Good luck. Best wishes Mel x