How many mpd patients in uk?

[Jackybuckley]

I found this group by researching about mpd,on cancer research site have so far found it very helpful and informative I was wondering just out of curiosity how many mpd sufferers there actually are in the uk as from what I've read it seems to be quite rare and there's not to many gp's that come across it in their normal everyday practices .....I know mine hadn't come across it ,but then she's only young not too long out of training. Just intrigued about it really .

[Emhalliday]

Hi Jackie, i live in Northumberland. I was diagnosed nearly 6 years ago and my GP had not heard of ET when i went to see her to which she asked me lots of questions and said she would do some research. I have only been back to my GP once since then as thankfully i dont ail anything and true to her word when i did go she knew more about the condition!!

[jillydabrat]

I think we were all told that mpn’s are quite rare but when you read everyone’s story on these pages it seems not. I always carry a printout, either from here or the MacMillan cancer site as a lot of professionals haven’t come across it or are unwilling to admit they know nothing about mpn’s and their symptoms. Maz can send you an information pack and poster for your GP surgery. I think most of us on here have experienced frustration when telling the health professional about the common symptoms and having them being shrugged off by someone who hasn’t a clue about the condition. Welcome to the sight anyway, it’s the best place in the world to get information about your illness.

[OZland in reply to jillydabrat]

Sure thing

For rare disease it is not so rare in my view in Sydney Australia at least

I was diagnosed with ET CALR in 2016 (probably had it for years undiagnosed) My dad was diagnosed ET JAK2 a week before me and we're still told it's not hereditary....My bosses wife 2-3 months later MPN

So.....

[friendofpiglet]

Dangerous things, statistics. However, I think the THIN database states a prevalence of 13.24 per 100000 of population ( bloodjournal.org/content/12... ). That would make a total of about 9000 MPN patients in the UK. Now, I might be misinterpreting and a margin of error needs to be allowed, but given that there are upwards of 50000 GPs, it's not surprising GPs are short on information.

Got to say the prevalence figures are astonishingly low and can't help thinking I've got something wrong!

[Kabuki]

Hi jacky I had Polycythemia vera for 22 years now post polycythemia vera myelofibrosis I have never met anyone else with a MPD in my personal life but did go to a talk a few years ago, I live in northumberland and have found that most GPs don't have that much experience with MPDs unless they have had a hematologist background (I was lucky enough to find one for a short while) but that they have been quite good at researching it and have been told it was nice to see me and to challenge their brains for a change and were more than happy to ask my consultants at the northern cancer centre freeman hospital if they were unsure about anything, that been said I have always kept myself updated on my illnesses and always check any medication before I take it just to be sure.

[catkinspolymer]

one in 200 thousand was the figure I was given , so divide 66 million by 200,000

[Brendaf]

Hi Jacky I have a very rare MPN one of 6 in the uk. Chronic neutrophilic leukaemia. I live in Liverpool but I am under the care of professor Harrison who is from Guys hospital in London. I was diagnosed about 2 years ago.

Brenda

[MichaelS]

What is rare? Its a good question. My nephew's father-in-law has ET, a friend of the family has PV, another family (not blood) relation has PV/MF

someone I worked with several years ago had PV and was very surprised I knew what he was talking about.

I was diagnosed with PVR in 1983 and it turned to MF in 2010 or thereabouts. I live in Bristol, UK.

Maybe not so rare after all

[danni4 in reply to MichaelS]

Where do you have your treatment? I have mine in Bath

[MichaelS in reply to danni4]

Southmead in Bristol

[liarose in reply to MichaelS]

What medication do you take these days. Is your spleen very enlarged

[MichaelS in reply to liarose]

I'm on 10mg of Ruxolitinib twice daily. This may go down because I am gradually becoming more anaemic.

The spleen is normal, in other words, it cannot be felt by me or the consultant. it went down within days of me starting the Rux, I'm pleaded to write.

What MPN do you have and what medication are you on?

[liarose in reply to MichaelS]

I am on 15mg of Rux for Myelofibrosis which I have had for at least 18months. Initially my spleen seemed to have gone quite a bit but on scanning recently it is 19cm. Having lost a lot of weight last year I have now put on about 3 stone since starting Rux and am a therefore a lot more breathless than I was. Also have started 2 BP meds which seem to be adding to my breathlessness.

[MichaelS in reply to liarose]

Rux seems to increase weight and I purposely got down to 57.5kg, but now back to 59kg. I am 4' 11" tall or 146cm. I was feeling fittest when I was 53kg, but a year after starting the Rux the weight started creeping up. The haematologist is happy with my weight, but I am not!

Its a shame your spleen seems to be growing again, they may want to increase the dose, but make sure you have a blood test after 2 weeks. When i started on Rux i was put on 20mg twice a day, but after a week i had a nose bleed and the blood test showed i was quite anaemic. I was going skiing at the end of that week, so i was given a blood transfusion and told to take no tablets for the blood, which was quite a break after being on hydroxy since 1983. I restarted the Rux 3 weeks later on my present dose of 10mg twice daily.

I also am breathless at times, but I know I am a bit anaemic which can create breathlessness and pulse pounding in the ears.

Best wishes and may your blood pressure be well controlled. That is something that had never been a problem with me, I'm glad to say.

[liarose in reply to MichaelS]

Thank you for the advice and good wishes. I hope you keep as well as possible also.

[swimswam]

I belong a Master’s swimming Club, of about 50 members, since being diagnosed with ET last year I have found out another lady’s husband has PV, and another swimmer has a friend who has an MPN but she’s not sure which one. I was quite surprised as I thought the disease was rare. Beginning to wonder if more cases are known about now than before the genetic tests were available.

[Hahag]

Yes me