PV and symptoms

Hello…My husband was diagnosed with Polycythaemaia vera one year ago.
Can anybody with this disease let me know if they have trouble with sores up noses?
My husband suffers with them daily and also his eyes are itchy and painful too.
I am really worried about him and maybe someone can help me.
Thanks

2 Likes

Hi @Doyler a great big welcome to our forum.
I cannot help you medically but what I immediately relate to is being really worried about someone you really care about and not being able to help them or make them better, it’s so hard.
The other thing I find so difficult is when I get a symptom or lump or bump I immediately think it is my blood cancer when it might be something completely different.
Has your husband checked his symptoms with his nurse contact, medical team or GP?
If so, what have they said?
Someone else may be able to help you more with their experiences and I will copy your post to the Blood Cancer UK nurse advisors for you @BloodCancerUK_Nurses
My husband is really suffering with hay fever this year, he doesn’t usually.
Both of you look after and be kind to yourselves.

1 Like

Hi Erics.thanks for replying…yes he has mentioned ot to.his doctor but they werent too concerned.i was just looking to speak hopefylly to other peor who have Polycythaemia vera (PV) and see if they have symptoms similar to my husband.

1 Like

Hi @Doyler

Welcome to the forum and thanks for posting

I have Polycythaemia vera (PV) and was diagnosed just under 3 years ago.

I have had a few sores inside my nose but not at the rate as your husband. My eyes are often itchy in sporadic times but this maybe due to hay fever or tiredness. General fatigue is a major symptom of blood cancer.

I think it’s definitely worth adding on your medical record but not surprised specialist have treated this as insignificant as they’re more interested in your blood and platelet levels.

The itching is by far the worst symptom I suffer with. That and sleep but this is often caused by having shocking iron levels.

To alleviate the itching and sores I’d probably advise doing a deep clean and maybe get him a facial. You never know and you can always get one too! :slight_smile:

Just a suggestion. And hope your husband feels better soon

2 Likes

Hi Rammie…Thanks so much for replying to my message.he has spoken to his doctor about these nasal.sores but they just arent getting a y better.He may say it to to his consultant on next visit.
His worst symptoms are his eyes, nose ,fatigue and muscle pain.he still works full time and im just wondering if he should be.

2 Likes

@Doyler

It’s a really tough call. If he loves his job then letting go and accepting his diagnosis is stopping him doings what he wants and/or needs to do… is a tough thing to swallow and accept!

Definitely let his medical team know. It maybe if he’s on treatment it maybe that, if he’s not on any treatment then it maybe time to start!

2 Likes

Thanks for all your great advice.
Does anyone with Polycythaemia vera (PV) experience pains in their feet and heels?
My husband has it a lot of the time too.

2 Likes

Sometimes this can be caused by poor circulation. People with Polycythaemia vera (PV) are very prone for this so it’s recommend to more or just stand up if even if it’s for 5 secs. Also keep hydrated helps with too. I very easily get pins and needles in my foot, but just try and shake it while I’m sitting much to everyone’s annoyance but it does help!

4 Likes