I’m soo worried..

I an 65 and I was diagnosed 8 years ago.

i take 2 hydrox a day.

mentally the first 6 months was difficult but i have no symptoms apart from some fatigue some days, otherwise I forget i have it.

i hope this helps x

Hello Adam

Try not to worry. There are probably much more informed people to answer you on here but from a personal point of view, it does get better. I am 2 years diagnosed now (Aged 50). Yes the initial diagnosis does come as a shock, but when you spend time in the hospital blood clinic, you soon realise that there are far worse off people than you. Unfortunately, a consequence of venesections means very low iron. From my own point of view, I feel this is the cause of tiredness and low mood. It is inevitable to feel like this BUT in my case, my body has got used to it largely. I no longer have to have daily naps in the afternoon and whilst I do have low days and fatigue, a positive mind does help. Take advise from your health professionals, have a read of the various threads on this forum It really does help. This condition is not life limiting and hopefully your mum will start to feel better soon. Best wishes to you both .

Hello Adam,

Firstly, can you give us an idea of where in the world your mum lives? Different countries have different ideas about treating this disease.

I live in UK and was diagnosed in January 2016. Although my age means that I should take Hydroxycarbamide, I personally don't want to so I am on venesections and aspirin.

Like your mum, my Hct was 58 when I was first diagnosed and my platelet count was also high. I still have high readings for red and white blood cells and platelets but I just accept it.

I don't have the energy that I had before my diagnosis. I used to be very fit and full of energy. Now I have to walk up hills at a slower pace.

So far as I know, though I may be wrong, the reason for our lack of energy is this: although our bone marrow is churning out blood cells by the million the cells are badly formed and immature in size. Red blood cells carry oxygen around the body. It is the oxygen that provides the energy to the muscles and to the brain. If the cells are too small they can't carry enough oxygen and so we get tied when we exercise.

If the hospital has provided you with readings from the blood counts, check to see the "mean cell volume"and "mean cell haemoglobin" levels and compare them to the reading from a normal person.

Your mum will be tired. The best thing that you can do is to try to accept this and to put your trust in the medical team that is treating her. Give her positive emotional support and try not to let her see that you are worried about her.

There are many many diseases which are worse than PV. She can live a happy life, just a little more slowly than before. Best wishes.

Huge thanks for the kind answers! It really helps.

The mental part of this disease are a true pain right now, me and my father are doing what we can too keep her mind from the dark side. My father is a bit like a turtle, which results in that it is me who are talking feelings with her. Im so scared that it always will be this mental state of mind.

Both me and my mom are very sensitive when it comes to feelings

We live in sweden, so i guess the approach regarding medication is the same as in the Uk.

Today she had muscle pain in the neck. But it went away as the hours passed. Is this common? I know some have issues with their legs and so on.

How far down can they push the iron? I have not seen anyone on this forum that have below 4.

Should i be worried about this? Does hydroxy push the iron down aswell? They told us iron injections could be possible in very small doses.

I know that she wont have anything near the energy she had before, i just hope it will be enough.

Ive read some have gotten suggestions when it comes to food. All we are told is to avoid is "blood pudding". Nothing is mentioned about read meat and beans etc. She tend to eat abit much sweets right now, but i guess that is ok.

Does hydroxy lower the thickness of the blood aswell? rct (0,52)

Im sorry for my messy writing/typing.

Thank you all once again!

Hello again Adam,

I have never asked for my iron level results. Here in my part of the UK the hospital doesn't provide it as one of their on-going bits of information. I think it is called "ferritin" and mine, at the time of my diagnosis, was recorded simply as "normal".

I have never had any muscle pains, or especially bad headaches, but we are all different. Any part of the body that is supplied with blood can be affected.

When I was diagnosed, the hospital gave me a printout of a document that is produced by a charity here in UK called The Macmillan trust. It is seven pages long and provides a lot of answers to your questions about Hydroxycarbamide. As I don't take the drug, I can't help you but if you look at their website you will find it. This forum doesn't like links to other organisations so I can't provide you with it. If you search for macmillan,org,uk and then look for cancer information, then cancer treatment, then treatment types you should be well on the way to finding information about Hydroxycarbamide.

By the way, at my first visit to see a consultant at the hospital, my consultant gave me this printout, pointed to the words "cancer treatment" and said "don't worry about that. It's not like the cancer that you are probably imagining. You can live a long and happy life". So that has been my approach to it,even though I refuse to take their recommended drugs!

Oh, I meant to say, I am a vegetarian so I don't eat iron contained in meat. But I do avoid eating too many dark green vegetables and too many beans and lentils. My husband says that is just as well as he would need to buy a gas mask if I did!

Hi, They discovered i had polycytheria back in late 2017. They discovered this because i had a stroke caused by Polycythemia vera.

They gave me Venesection for months to take the blood levels down to an acceptable point (felt tired during that time) and during this time put me on Hydroxycarbamide. Hydroxycarbamide is a chemotherapy treatment and is also known by its brand name, Hydrea. Hydrea keeps me at a normal level. There are side affects which including fatigue and weird itching among others. Which according to the booklet they gave me - which of all the side effects you get is dependent on how your body reacts. The one i hate is not being able to smell my food and get weird non existing smells. I get times when i itch and other times - pin prick itching that turns to pain and then disappears. I react to sunshine more turning an intense dark brown. See the NHS Booklet on Polycythemia vera.

Currently i am on 1750mg a day. keeps my blood level.

Other that that i get on with life, I work - do the things i want to. I am not as old I'm 61. Despite the stroke i'm able to carry on almost as normal. My disease is not the end of the world.

Some people i have read about have been on it for 15 + years.

I hope this helps.

Adam, I live in the Derbyshire Peak District in England. As the name suggests, it is hilly. l am a keen gardener and my garden is on a 45° slope, about 100 x 50 metres in size. I am in my garden just about every day doing something. My husband doesn't understand gardening, doesn't like mud or wind, only does heavy lifting if asked, but is happy to eat as much fruit as I can grow, so I do it all. I have a relaxed attitude to weeds. Many of the plants in my garden are technically weeds but if they keep the bees happy and don't have too many children then I let them stay.

I don't drive a car. Hate them. Never got my car licence. Gave up driving a motorcycle in my fifties, long before I was diagnosed with PV, but I can't see why your mum shouldn't drive. So far as I know PV doesn't affect your eyesight.

Like your mum, I hate sitting still. A typical day for me would be get up at 7.30, eat breakfast, feed the birds, feed the fish, feed the cats, wash the dishes, clean the floors, walk to the shops in town (a fifteen minute walk downhill and a 20 minute walk back, carrying a rucksack and a shopping bag), have a cup of tea (used to love a strong coffee but it makes me feel odd now),do some gardening, prepare lunch, wash the dishes, do some ironing, read the paper for five minutes (too depressing for more), visit a friend in town for a chat, come home and make a cup of tea, prepare dinner, feed the cats, talk to husband about his day, send emails to friends in other places, watch television and probably fall asleep from boredom, feed the cats, go to bed. at 11.

Not very exciting, but we aren't very exciting people!

Sometimes, because we live in a pretty part of the country, friends who have the misfortune to live in London and other places decide to come and stay for a few days. I cope fine with that. They understand that I'm not going to be serving a three course meal twice a day and they know where the cups, teabags, wine bottles and glasses are kept. We go out for meals - I no longer drink alcohol (same problem as coffee) and have a good time. Well, I do anyway, and they do return year after year, so it can't be too horrible for them.

Sometimes, if the weather is nice, we go walking - it's a really good area here for walking, horse riding, cycling etc - and I can still go uphill and downhill as before. The only difference is that a two hour walk used to be a ten kilometre walk and it's now a six kilometre walk. But there's always a rock to sit on to enjoy the view.

It's all about pacing yourself.

My life has not changed since my diagnoses.

some days I am tired but I am early retired to help with grandchildren so i am able to rest.

I am lucky as we retired to London, where i was diagnosed and have the best hospitals.

my new social life helps as there is so much to do and i suggest you encourage your mother to get out and about if possible.

i still drink alcohol and my specialist tells me to keep going as i am.

i have found other people with my condition on twitter and we support each other.

i realise we are all different but supporting each other is a good thing.

Hi Adam. I was diagnosed with PV about 13 yrs ago. I was 65 yrs old. I had a high red and white count. They did blood draws at first then changed to Hydroxy. I for the most part felt fine, except for worrying. We can live many years with this disease. I get sweats whenever I work cleaning our home. And I often feel too hot while sitting. I suspect your mom will feel more at ease once she gets her meds

adjusted so they work well, as mine did. I suggest that she try to stop worrying. There are many other diseases much worse than PV. I have lived a normal life since being diagnosed. Best wishes, harrishill1

I cant explain how much the words from all of you mean! Thanks allot!

It have been much to handle lately, therefor my late reply.

She have been on 2 capsules a day now for some weeks now, and her readings are dropping. plalets are around 600 now, evf 0,47.

will her numbers continue to drop like they are now? Or will they halt? How much time does it take before you can see the final results with the med?

Im asking since im worried that she might have too take a larger dose

Thank you sooo much!

you can find a hematologist and get on interferon treatment instead of venesection. hydroxy works too, but interferon better. google it, you should be able to find more information.