Managing Symptoms of Polycythemia Vera

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Good morning. I have recently been diagnosed with polycythemia vera and given the good news that my very severe aplastic anaemia is formally in remission; it had been managed well for the past 10 years but the relevant cells have only recently disappeared.

I am experiencing a number of symptoms including fatigue, rashes/ itchiness, migraines, Reynolds disease, night sweats, a red face, elevated blood pressure, and infections. I am also experiencing digestive issues including nausea and a sore stomach to name a few but suspect that is from the clopidogrel medication.

I have already started venesections so had anticipated some of the symptoms to abate. The only things to have improved is permanent fevers.

What I am wondering is if anyone, having started treatment for PV, experienced the same symptoms and how long it took for things to settle and the symptoms to depart. Or, did things like the fatigue and itchiness continue but just at a lower level?

I appreciate that all people are different but I would be interested in any shared experiences and what people did to overcome them/ treatment received.

thanks

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Hi and a welcome to our community forum. I certainly cannot help medically, but what I have noticed is that many of us share the same thoughts, feelings and practicalities. You will also find quite a lot of posts on living with symptoms like fatigue. You have outlined your symptoms so clearly and I have also found writing my symptoms down before my medical appointments helps me ensure I do not forget any to check out. At the top of this page you will see details of the Bloodwise support line if you need it. Take care.

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Hi @dragonleaf wishing you a very warm welcome to our forum :blush:

I hope you have been doing okay?

I’m so sorry to hear about the symptoms you have been experiencing. They sound really uncomfortable. Do you find anything helps ease them at all? Like, for example, going for walks, or giving yourself regular breaks?

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Hi Dragonleaf,

I have PV and found that my migraines eased after a few venesections and my haematocrit fell within a normal range. I also started low dose aspirin so I assume this helps too! It was such a huge relief as I’d had crippling migraines for about twenty years!!

I’m always a little tired … (I think that’s because I’m always a little iron deficient) and always a little itchy after a shower. Sometimes this is worse than others and there seems to be no explanation as my blood is pretty stable at the moment.

I’m currently taking interferon, as we just had a baby, and this seems to keep my bloods very stable but I know some people really struggle with this medication. I think I’ll stick with it.

Hope you start to feel better soon! It was such a relief for me to be diagnosed as I finally had a reason for the migraines, visual disturbances, brain fog, tiredness etc… Things are much better now and there seem to be new developments happening all the time in MPN research world so the future is less scary.

Take care
Hannah x

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Gosh Hannah, you certainly have a lot on your plate medically and you have just had a baby. How are you dealing with everything emotionally?

Really well, thank you! …I think xx

It took us 6 years to have Libby…PV being a bit of an obstacle but we got there. We have a shift system on the go so I get enough sleep (I think our friends find this a bit odd but it’s worked for us so far!) and she’s 4 mths now and starting to be a little more predictable :rofl: …sometimes… which helps.

We know we’ve been very lucky :smile:

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Good afternoon just like you was diagnosed with PV but at present am on clinical trial have been taking RUXOLITNIB for some time now and it has helped to control my levels wondering if there’s anyone else on the drug and how are they coping

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Hello @Ronald. I have a different MPN to you, namely myelofibrosis and I have been on Ruxolitinib since 2017. Initially my Hb dropped quite a bit and I needed blood transfusions quite regularly but things have stabilised now and the blood transfusions are less frequent. I find the Ruxolitinib helps with the bone pain I experience. It doesn’t take the pain away completely but has made it a bit more manageable. I do suffer a lot with fatigue and itching but that seems common to most blood cancers. I wish you well. Hope this helps. Willow

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@Hansyhand how have you been doing the past few months? Hope you and Libby are both doing well :slight_smile:

@Ronald thank you for posting this. How have you been coping recently?

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Thank you so much @Willow for sharing your experience of Ruxolitinib with Ronald. Glad to hear things have stabilised for you - I do hope that you’re doing well and that your mum and sister have been doing okay too.

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Thank you @Alice_BloodCancerUK for asking how I am and for remembering about my mother and sister. We are all having a very difficult time. My mother has dementia and has just come out of hospital following a fall. She also has a recurring c.diff infection so obviously it wouldn’t be wise for me to go and see her especially as I am still shielding. Sometimes I feel I can only just about cope with my own health issues and so when family members need support too I don’t have much to give. The spirit is willing but the flesh is weak! I feel very stressed and fatigued at the moment. Thirteen weeks of shielding are taking their toll. Sorry to moan! Take care.

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Oh, Willow, I am not surprised you are feeling overwhelmed with everything you have going on. As you say just coping with your own health issues is just about enough, then there is shielding for so long, it is seeming a very long time now. Then there is worrying about your mother and not being able to be with her. Being a daughter and a carer brings it practical and emotional sides and I find both are very stressing and fatiguing, whether you are with the person or not. You are only human and it is easy for me to say don’t beat yourself up but instead pamper yourself, but perhaps it is worth a try. We are all here to support you and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday or via email at support@bloodcancer.org.uk if you need to. Perhaps a beautiful willow tree needs to be nourished with sunshine and rain to flourish.

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Oh @Willow please never apologise for moaning! This is a space for anything you want to say and get off your chest! You have so much to cope with so it’s totally natural that you don’t have much to give at the moment. I’m so sorry you’re feeling stressed and fatigued. Is there anything you find helps with this? Take good care

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Thank you for asking coping well though still shielding having received the letter twice being a postie for over 30 years really missing my customers still NHS have been amazing stay safe

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You must be missing the outdoors and exercise as well as your customers. Getting our post, even the brown envelopes breaks my day up while shielding. It is better to err on the safe side, especially as nobody really knows what is the safest way to go forward. Hope you are not finding shielding too trying. Take care

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Hi @Ronald, I am glad you are coping well and still shielding, yes, I am too. I bet you miss all your customers though, but it is best to stay safe. Please let us know how you get on.

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I too have myelofibrosis and am on Ruxolitinib. I became severely anemic and needed blood transfusions on my previous meds and am more stable than I’ve been for ages now that I am on Ruxolitinib! It’s a bit of a shame that it is, apparently, a particularly highly immuno-suppressive drug, making us more at risk from the virus but, other than that, I feel better than I have for years!

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