MPN Voice
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I discovered I had PV C 27 months ago after a routine blood test. I was put on a low dose of HU which did not agree with me. I had every known side effect and began to feel suicidal. I changed consultants and am now on my third who is trying to keep me off medication as most drugs do not agree with me and my allergies. I have been off the HU or 44 days and my platelets are now in the 700's and rising. There does not seem to be any correlation between my blood test results and time, the nasties just go up at varying rates.

6 Replies

I really hope someone is able to find something to help you!

Sending prayers...

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Hello Xerxes, I am sorry to hear that you are having so many problems with medication, it must be so worrying for you, I can understand that you felt so low, I do hope that you get this resolved soon. Maz

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Hello Xerxes,

is platelet harvesting a possible option?

Town Crier

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Well how rotten for you and how very worrying. You don't say where you live , what your allergies are, how old you are, whether you're rushing about after a family etc.

Are you seeing a haematologist who really specialises in MPN's?

Have you seen someone who might be able to help with your allergies?

I had a foul cocktail of antibiotics three years ago which caused me severe nerve damage ( almost gone) but has also made me intolerant to histamine, present in 80% of foodstuffs, so I have to be very careful with food and drugs. I've had PV for 6 years, and take 2 x HU daily. Fortunately and touching wood big time, it seems fine with me.

There is a trial drug called Ruxolitinib which you could ask about.

My haematologist at Christies in Manchester keeps trying to persuade me to try it - I thought the trials were closed but apparently not- but I'm happy on hydroxicarb at the moment.

I have no idea if Ruxolitinib would help your platelets but it's certainly helped people with PV who can't tolerate HU ( hydroxiurea/ hydroxicarbamide) might be worth asking.

(Re allergies I have an appointment to see a highly recommended chap called a Dr Seneviratne

You can google him, extremely well qualified, and an allergist and immunologist. There are a lot of money grabbing quacks out there so it's important to be careful.

He may be able to help but is quite pricey. He may have an NHS clinic I'm not sure, his contact details are on his websitey thing)

Only saying this because I have to be careful with drugs too.

I don't know what the different drugs for PV do, but it does sound as though you might need to see someone who knows what they're doing.

Chin up!

We've all been there, and you will you know eventually get sorted, it's just that this jolly old PV, platelet and haematocrit business takes a fair old time, and our levels constantly shift. Mine do anyway.

Doesn't bother me, I just think, hey ho, it'll be fine!

Meanwhile, try and drink 3 litres of water every 24 hours, get an hours brisk walking in a day, and cut out all crappy food, rushing about and stress if you can's important to look after yourself.



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All good wishes, I'm sorry to hear you are having such a tough time, and I hope it gets better soon. I know its hard to feel positive about anything when you are unwell. Hope you get some good help, just keep asking.

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Xerxes would like to thank all the very good folk who have offered advice. I will keep right on to the end of the road buoyed by your kindness.


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