MPN Voice

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Hi, I'm 57. I was diagnosed with Jak2 PV last July and I can honesty say, I've never felt particularly well for around 20 months now. My hematocrit level was extremely high when I was taken into hospital and was brought down with around 11 venisections in three months. I had a further venisection in September as my levels were rising again, including my platelets which are currently just under 600. I am presently off work with really bad fatigue and my consultant advised this week that it's due to my iron being extremely depleted due to the venisections. I suffer from night sweats (that happen during the day too), burning feet, bleeding gums, poor concentration etc. The only thing I don't suffer from that can be associated to the condition is high blood pressure. I'm even having stomach problems with taking aspirin, even though I take the gastro resist type.

Oh the joys! Does it ever improve? Regards, Joyce

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It does improve! Stay strong— emotionally and reach out as you have done here. It was frustrating and depressing to me during that first year. I’ve always been a busy, energetic person, and the fatigue interferes with life as I lived it before. staying strong for me means powering through the fatigue and forcing myself to work and live. Try to get some regular exercise, drink lots of water, and ask people to help even if you never would have before. Try to come to peace with it and accept that things have changed but you still have a life to live.

Things will also probably start to stabilize for you soon. I was at about your point when I only needed my venesections (phlobotomies) done twice a year.

I’ll pray for things to settle for you soon!

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Thank you for your lovely reply. My theory thus far has been that PV will have to live with me and not the other way around. I was even going to the gym with my daughter 3 times a week. But presently, for once, I am listening to my body. I'm a teaching assistant and fatigue along with the dizziness and poor concentration, school's not the place to be.

However, I will return after Christmas raring to go!

Kind regards, Joyce

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I am jak2+ with PV around the same age and had / have similar symptoms. I was diagnosed in March last year, treated with venesection to begin with then increasing hydroxycarbamide to my current settled dose. Strangely, even with venisection, I had high iron levels but still suffered with fatigue. I found that most of the symptoms eased but the biggest problem was always fatigue. I always wanted to work full time (still do) but I was eventually persuaded that I should use my employers Personal Health Insurance and go long term sick on a % of salary. The main reason being to concentrate on looking after myself. This forum, the MPN Voice website are great resources to find out more about your condition. Everyone is different so ask a lot of questions of all your medical people, get second opinions, follow a healthy diet (I try my best) but still have a little enjoyment. Drink loads of water, then drink some more. If you ever get the opportunity, attend one of the regional patient forums, they are the best. Keep communicating, here and other forums. You will find many different recommendations, vitamins, medication, etc., but always check with your medical professional and always tell them ALL of your symptoms. Remember everyone is different, you have to find what suits you. We're all here to help if you need us.

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Hi Donald, thank you for your reply. I've read through 4 replies and I'm beginning to see that although we have the same condition, some people are lucky enough not to have too many symptoms. We're unique in our uniqueness!

Kind regards, Joyce

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We are an extra special bunch!

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The fatigue isn't great I am still getting to grip with mine only diagnosed in September and only 45 looks like I will have to have B12 injections to help with the iron levels keep your chin up and keep asking the questions this site is great with very experienced people who have gone through a lot I read it daily just to keep me on the right track and it helps to know there are people out there who are listening and advising and having the same symptoms as you

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Hi Cliff, Thank you for your reply. My consultant said I can't take anything that will boost my iron as it will set off the overproduction of red blood cells.

I'm impressed with this site, with the leaflets they produce and the shared advice from fellow PV members.

Kind regards, Joyce

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Dear Joyce,

Many of us were in your position when we first discovered we had PV. It is such a shock to the body both emotionally and physically. While the venesections are vital at the beginning there comes a time when they have done their initial job and the anemia and increase in other cell lines indicates a need to introduce medication which controls them in a different way. When I reached this point I got a 2nd option, privately, with my haematologist' s understanding. I can go into this in more depth if you wish and email me direct. Good luck. Mairead

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Thank you for your reply. It's helpful to hear from people who have the condition rather than just reading about it. I imagine I'm not alone when I say that I hadn't even heard of PV. This site is very informative, helped also by providing contact with other sufferers. I am currently happy with my consultant's treatment and advice, it's the disease I'm not happy with lol

Kind regards, Joyce

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Dear Joyce very pleased to hear you are currently happy with your consultant's advice.

Finding out more and more about your PV is the way to go. I 'loved' my initial haematologist, he was the kindest most ego less doc I have ever met, apart from Prof Harrison at Guys.

But my deep research began to supercede his knowledge of treatment of PV, hence my 2nd opinion and moving on to what I considered better treatment options. The haem and me both learned a lot and remained the best of friends. And he helped me get medication which was outside his treatment options and budget. I also moved around abroad in the initial years and I was astounded at the confidence and ignorance of PV that many top consultants had. I understand this is changing and at my last visit to Guys I was delighted to see a New Zealand exchange doc observing. I had some of my most negative experiences there!

The point of this is that I found it pays to research and understand PV. It is orphan disease in that it is not mainstream but is becoming so. This website is invaluable, as are the conference days. American sites too provide lots of technical info. I can give you one site tomorrow, I have deleted all their emails to clear inbox.

Over my 12 years I learnt that venesections are necessary and vital as emergency treatment. But they upset the balance and the body rushes to replace what looks like a major blood loss, which of course it is. PV is a disease of overactive bone marrow production of red blood cells. Allowing it to over produce and taking off the excess is only one way to deal with it.

Happy research and come back if you have any questions.

Mairead

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Hi Joyce! Welcome to our jolly band!

I have an awful lot to rattle on about so please bear with me.

I'm Louise, 63, live in Windermere Cumbria. Married. Diagnosed 2009 with haematocrit of 74. Useless gp - believe I had problems for around 7 years. I buddy 19 ladies with PV aged 78 to 36. One gave birth to a beautiful daughter last year. Not the 78 year old I might add but having met her I believe anything's possible!

So. Don't be downhearted, things can and will, with the right treatment and your own input, get better.

How is that going to happen? You need to be your project manager. The project being your health. HOWEVER, you must be really REALLY aware that most of the posts on this site are by patients who aren't feeling tickety boo - there are hundreds of us out here who DO feel well, so please please do not be put off and think that the only mpn patients are those who don't feel 100%... I feel well and have few problems. Perhaps I'm lucky, I also think it's partly because I help myself.

1) find a haematologist who speciliases in MPN's. There are 36 blood cancers, and haemos can't specialise in them all. You are entitled to choose your hospital, ( apart from in emergencies) so do your research. I decamped from my local hosp to the Christie in Manchester. I now have a super haemo in whom I have absolute trust. I have a journey of around one hour 40 mins there and back every 4/6 weeks. Worth every mile, it's my health.

You should be seeing your haemo every 4/5 weeks (More if your haematocrit is above 45) in these early stages.

2) if you haven't already, read every word applicable to you on mpnvoice.org.uk , brilliant website. Attend a forum, or forums, apply for a buddy ( I can't offer I have to be asked - just email Maz)

3) have a look at patient power. It's a US site but no less excellent for that. Run by Andrew Schorr who I know personally - he and his wife stayed with us a couple of times and he is dedicated to helping others. You will hear super haematologists speak on this site inc the wonderful and very personable Ruben Mesa. I'd quite like him in my wardrobe actually.

4) Drink 3 litres of water every 24 hours. Sounds a lot - do NOT swig it all at once. Yes, you'll nip to the loo a bit more but hey, what the heck. I actually can last around 3 hours after drinking 2 litres so it must be absorbed into my blood stream cos it sure as hell isn't going into my bladder!

To begin with moderate or cut out alcohol for 6 weeks. If it makes a difference then you'll know what to do, if it doesn't drink moderately anyway.

Don't smoke ( you prob don't but thought I'd add that)

Lose a bit of weight if you need to ( apologies I don't know if you're model slim, just right or a heffalump) less strain on the heart and blood pressure and you'll feel more inclined to exercise.

5) EXERCISE . I've been banging on about the benefits of exercise and diet for about 7 years. Personally? I walk. Very briskly. It isn't easy now I don't have my darling little dog any more ( no dog, 96 year old mum in a home = freedom) but boy I miss her and it's soooo hard to walk on my own, but I do.

I also formed a walking group and walk with the U3 A when I can, otherwise I get out and walk on my own. Usually take my mobile have it on Squawk box and make all the calls I don't have time for at other times. Even if you feel as though you're incapable of hauling yourself out of the chair, please please - try. Pound the pavements for an hour, with a friend / family member if you can.

My husband still works so quite often I'm on my own.

Or cycle, join a gym. Walking I think is best. Safe and cheap! Do it, please.

REST SLEEP AND NO STRESS. try and spend at least 8/10 hours horizontal in bed whether asleep or not. I go to bed before 11 and get up around 8.30. If you're working go to bed earlier and get up earlier. Speak to your boss about flexible working maybe?

DIET - you sound an eminently sensible lady so I'm sure you eat well, but just in case ( and I know it's easy when you're working to schlepp off to the local supermarket and stock up with ready meals - I used to) Don't eat ready meals or processed stuff. They'll full of trash which causes inflammation in our bodies ( read about inflammatory foods and what they do) we do NOT need inflammation. Maybe cut down on caffeine - personally I drink only water, organic elderflower and Rooibos naturally caffeine free tea but that's me. ) I know I sound like some sort of hairy legged horny toenailed moon howling whacko but I'm not, honestly!

Loads and loads of veg, fish is good, moderate amounts of red meat and fatty cheese, google the amount of protein that our bodies need. You'll be amazed. I'm 8st 10lbs and I only need around 1.5/2 protein daily.

Lots of fruit. I try to stick to gluten free but not all the time - if we eat out for instance I guzzle decent in house bread ( no additives or preservatives)

To be honest Joyce I'm rambling now, but read between the lines and cut out all foods laden with additives preservatives and chemicals particularly non organic chicken.

Anyway, hope all that helps. You will improve, maybe not back to what you were ten years ago, but with the right treatment and a lifestyle change you hopefully will feel much much better you do now.

Love

Louise

xx

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Thank you!

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Hi Louise, you make perfect sense.

I don't drink water, yuk! Though I think I could manage if I had a sugar free squash in it.

I do drink too much coffee.

I don't particularly like fruit, veg or fish, but I could make more effort.

I realize that by having problems with my stomach that I've fallen into a habit of just snacking and this has probably impacted on my iron count and contributed to my lack of energy.

I love my bed and always get as much sleep as possible. However, the night sweats and burning feet disrupt my sleep so I'm currently taking Amitriptyline (prescribed by GP) to help me rest

I was until the fatigue got bad going to the gym with my daughter 3 times a week (I will be going again asap!)

I do walk briskly (helped by the long legs) but I am slower at the mo.

I don't smoke and drink only occasionally.

I'm not overweight.

And I will definitely take your advice and take care of all of the above!

I know what my new year's resolutions will be for 2018!

Thank you.

Kind regards, Joyce

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No you didn't, everything you said was good advice.

Thanks, Joyce

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Hi Joyce,

Well I did prattle on a bit didn't I?

Do try with water, sugar free squash is full of additives ( look on the label and it's all got to be sieved through your kidneys and liver) try a little bit of fresh orange or apple juice in it instead, better fructose than rubbish!

It's amazing how you get used to it.

x

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Hi Joyce

Magnesium will sort all your problems.

greenmedinfo.com/blog/magne...

Peter

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Thank you for that. I'll check with my consultant. It is definitely iron depletion that's my current problem, it's only 4, it was elevated at 22 when I was diagnosed last year.

Kind regards, Joyce

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