Idiopathic Erythrocytosis

[Nozboz]

Hi all

Sorry I haven't been on here for a while and I hope you are all doing ok. A little while ago my condition was changed from Polycythemia to Idiopathic Erythrocytosis although my research sees that they are both similar and have the same treatment. I still go to Hospital every 4 weeks and need a venesection and one aspirin a day but nothing else has changed. I have had this condition for around 13 years now and thanks goodness I am doing ok. The only thing I would like is to be less knackered with more energy but it seems nothing I do helps.

Does anyone with this condition have any ideas around good foods and bad foods as I have been told a dietitian would not help. I am aware to stay aware from high iron foods but have never been told by anyone what would be good including any vitamins that might help me.

Thanks

Noel

[Mishie14]

Hi, Nozboz. I have ET JAK2 going on three years since diagnosis in March. I inherited thalassemia, also a blood disorder that is not curable. Both cause anemia so some days I feel overwhelming lack of energy and no desire to move in particular in the AM. My hemoglobin and HCT are steady but stay permanently below the bottom of the normal range. I used to be a morning person but now am an afternoon person. Mornings are the hardest for me but I do force myself to walk our little schnauzer choosing the short or long walk as weather and my mood dictate. Sometimes either length walk helps me feel better and sometimes they make no difference. I have a sit down leg exerciser that I try to use every day. It's low risk sitting down and can be manual or assisted leg motion. It helps on bad weather days and when I am feeling down. Hematology has twice given me an iron IV treatment which has done wonders to make me feel better for a few weeks. My whole attitude changes for the better. So for my circumstances a little exercise even when I am feeling very low energy and the iron IVs have helped me. Absorbing iron is among my problems so cannot overdue it. There is no food or drink that helps physically but an occasional glass of red wine helps my outlook.

[Nozboz in reply to Mishie14]

Thanks Mishie I was JAK 2 negative when first diagnosed with Poly but to be honest no other check are ever done now really since the diagnosis change. I do say about my tiredness and lack of energy to the consultant and nurses but I get no further. I have venesections every 4 weeks without fail because my levels are always too high. I have an active full time job and I eat sensibly but maybe my water intake is not the best. I'm told I am not allowed energy drinks as they are too dangerous so its quite difficult at times.

[Mishie14 in reply to Nozboz]

Good point about water intake. I was never much for water other than ice water to refresh on hot, muggy days. Now I am told to drink 1-2 liters per day and it is hard. The water helps with hydration obviously, the significance being helping to thin my thick blood and helping to clear out liver and kidney waste. Increased liver enzymes was a problem but water and milk thistle have proven invaluable keeping them in reasonable range.

[Nozboz in reply to Mishie14]

In do have quite a bit of Milk everyday Mishie14

[Bindi77 in reply to Nozboz]

hello I’m curious what the problem is with energy drinks?

[Nozboz in reply to Bindi77]

My GP said it can cause a sudden shock to my heart so never take them. I was shocked as I am only 58 and never had any heart problems thank goodness

[Bindi77 in reply to Nozboz]

Thank you for your response

[hunter5582]

If you are doing venesections every four weeks then the cause of the fatigue may be chronic venesection-induced iron deficiency. This is what happened to me when I was using venesections to control the erythrocytosis. Unfortunately, iron deficiency without anemia (the intent of the venesections) can have adverse effects. For me, these included decreased energy, and decreased ability to concentrate, mild memory impairment, and cold-intolerance. These symptoms all improved when I went on the interferons and let my iron levels get higher.

Regarding diet, there may not be more to do than to eat a healthy diet. Many of us like to use the Mediterranean Diet. It is worth considering nutrition as an intervention but I would not advise trying things blindly. It is best to get a proper assessment. When I did a complete nutritional evaluation we found that I was deficient in iron, Vit B/folate, Vit D, and magnesium. I take supplements for all of those except for iron under the direction of my Integrative Medicine doc.

I am wondering about the change from PV to idiopathic erythrocytosis If you had a confirmed diagnosis of PV with the JAK2 mutation, this would not happen. If you had a triple negative PV diagnosis, then that might be a change in how the diagnosis was considered. It is worth making the distinction as some of the cytoreductive medications that would be considered for PV )Besremi, Jakavi) would not be considered for idiopathic erythrocytosis. Suggest that you review your diagnosis with a MPN Specialist if you have any questions.

Wishing you all the best,

[Nozboz in reply to hunter5582]

Thank you Hunter that's very helpful

[Aime]

Hi, I'm sorry too I've not been on for ages either. My joints cause more trouble than my I E. I think diet wise, the advice is as healthy as possible, plenty of water, etc. I might be wrong but unless you are eating iron rich foods in big quantities, then I don't think you can get too much iron from food - maybe Hunter can advise on that point.I very seldom need venesection now but not sure if multiple orthopaedic ops are helping red cells stay lower.

I think rest is vital too. If you need a rest, your body is telling u to do so. I'm the world's worst for struggling on and I end up a whole day, I am use for nothing!

Hope this helps! Aime 😻

[hunter5582 in reply to Aime]

You are right on target. Eat a healthy anti-inflammatory diet, noting that it is difficult to absorb iron from diet alone. Heme iron (from meats) is the most easily absorbed. Plant-based iron is the most difficult to absorb. The vast majority of the iron our body uses is recycled from worn out red blood cells that are being replaced. That is why venesections remove RBCs thus remove iron from the body.

[saltmarsh]

Yes, that fatigue is a challenge. I've been dealing with pv for 5 years. Initially it was controlled by venesections and aspirin. A bit later started on HU. After 2 years I had a bout of iron deficiency anemia and was put on iron pills for 6 weeks. I switched doctors because I didn't think my former doctor was thinking enough about my case and tended to operate in a reactive mode which didn't really help me much. My new doctor stopped the venesections and reduced the HU and added vitamins b and d with an occasional iron pill. I've since cut way back on b and iron and generally feel pretty good. I tend to start my day early but am drained by midafternoon. At 77 I am pretty active with kayaking and biking so feel pretty fortunate. Also, I have figured out that for me I needed to cut back on my nightly glass of whiskey. For some reason, that seems to make the fatigue worse the next day. Trust me, there is a solution out there for you. We all react differently to this disease so solutions, in my very humble opinion, need to be tailored a bit to the individual. Good luck moving forward.

[Nozboz]

Thank you Saltmarsh

[saltmarsh in reply to Nozboz]

Just saw the comment about water intake. I was never a big water drinker. However, I learned, the hard way (of course), that drinking 12 ounces of water when I woke up plus another 12 ounces of water with breakfast set me up for the day and eliminated morning dizziness completely. I drink a few more glasses during the day but, for me, the morning water is key. Again, good luck. Give it a try.