New to this site (scare)

My partner age 33 was diagnosed last week with mpn but they said he sits in the middle of them all tested jak2 + for pv ,currently having venesection with is just about at normal level now but platelet have gone up to 1200 . Consultant talking bout putting him on interferon. I'm just so scared we have 2 small children and can't stop thinking the worst .

17 Replies

  • Hi Brook, i'm 47 and have PV JAK2+. My current treatment is aspirin and venesection. My platelet count is quite similar to your partner's; however, my consultant hasn't suggested medication. Your partner is quite young, I'd be worried about starting medication, but you obviously have to do what the doctors say is best. Might be good to seek for a second opinion, though.

  • I think they are doing it as they said he has a 3rd of the others as well , as he was just on asprin and venesection till all the results came back.

  • Hi Brook04 and welcome to this forum. There is a lot to take in when you are first diagnosed with an MPN. I think that this in itself creates its own aniexties.

    The administrator for this forum is called 'Maz' and you can request for her to send you some booklets that explain about MPNs. Also, you can request to have a 'buddy' to support either you, your husband or both of you.

    All that being said, there are many people on this forum who have had their particular MPN for many many years. Some have symptoms others don't. These conditions on the whole can be managed and controlled with good input from GPs and Haematologists.

    I can understand your concerns with two small children. This is only natural. However, I think your fears will be alleviated when you get some more responses from the forum. You will be supported well here.

    Mary x

  • Thank you,I feel alot more at ease already

  • Hi Brook - as others have said MPNs are scary when first diagnosed but many of us have learned to live with them well. I was 47 when diagnosed, with daughters aged 11 and 13 years old - 13 years later we are all still going strong..!!

    I have ET and am on interferon (Pegasys) and it works really well for me - it's brought my platelets under control quickly, no bad side effects and I only inject once every 4 weeks.

    Hope all goes well for you and your husband.


  • Thank you,they thought he just had pv but it's come back jak2 + for that but the consultant said he sits in between them all ,he's had venesecton blood count is just bout normal but platelet have gone up they said that's normal when u have blood removed. They think he has had this for over 2 years as vlood count was high then

  • Really like this site so many positive stories,this is the site my consultant told me to go on. Better then keep trolling the Internet

  • Hi Brook,

    I'm so sorry that you husband has been diagnosed with an MPN. However, there are so many positive people on this site, and with every reason to be. I was diagnosed last year and at the time, I worried an awful lot. Now I am mostly ok. Get some off days, but I did anyway.

    When you husband's treatment gets underway, I'm sure that you will be able to look forward with a lot more positivity.

    Good luck to you all.



  • Hi, it is scary when first diagnosed, especially if you Google it!! I have ET, diagnosed nearly 6 years ago. I was just on aspirin at first then Hydroxicarbamide for over 3 years, now on Anagrelide. Don't believe everything you read on the internet. There are lots of gloomy things written about mpn's - usually by people who have no idea about them!

    There are lots of people on this forum who have been having treatment for various mpn's for many years. No question is too silly to ask. Someone will already have asked it!!

    It is usually us old codgers who develop mpn's but there are an increasing number of younger ones too. However he is now getting treatment and being monitored so hopefully all will be well.

    Read through some of the posts on this site, you'll soon feel more confident - I know I did.

    Best wishes


  • Hi it can be a little scary at first but hopefully once you learn more about mpn you'll deal with it , try not to worry drink plenty water and eat healthy 👍

  • I think it's more scary as they said he sits in the middle of them all

  • I'm one of those "middle people". I think you mean that he has an mpn but the type is undefined because he has attributes of several different kinds. I was dx at age 48 after 2strokes hit from out of nowhere, my playlets were just out of normal range at the time 453,000. That was 18 myths ago and I'm on interferon- doing well. Being undefined adds a little more anxiety to it all since there are only a handful of us. iHere is what you need to know: (1) you must get a second opinion and it must be from an expert- we are the rare of the rare. (2) doctors may argue and disagree...that is to be accepted. Let them argue directly with each other- don't get in the middle.(3) most experts believe that we are either very early stage, or in the midst of converting for et to pv...either way they support early treatment. A small group of docs think we may be a different phenotype of the disease...that makes us medically interesting. Being interesting means the doctors will want to work with you...that is good. Remember your hubby is in charge- the docs can advise but you two have to make the decisions because we are in uncharted waters.

    I like to think being undefined means my options are limitless. There are a few of us in the us and we help eachother Ping me whenever you need. Also/ take all advice w a bit of salt...-as your experience probably will be different .

    Good luck to you.

  • My platelets run between 1100 and 1400. I'm 46, and at the moment my consultant is keeping me on just Aspirin. Maybe it is worth another discussion to see how vital it is to commence other meds

  • Would him having all 3 make a difference and I was wondering as he is 33 she may wanted to do it now b4 it progressed.

  • Hi Brook , Like you I had two young children when I was first diagnosed with ET in 1996 and I had shown symptoms 10 years before that in1986 , I am now 72 and about to be a grandfather. Life expectancy should not be significantly different to the normal population as long as you keep the blood counts under control.

    all the best Town Crier

  • Thank you that's good to hear,and congratulations on becoming a grandfather.

  • Hello Brook, welcome to our forum, I can see that you have had lots of great replies, I am sorry to hear about your partner, it is indeed a very scary time when you are first diagnosed, and just as scary for you wondering what lies ahead for you both, but as you can see there are very many people living with MPNs who have had them for years and are living near to normal lives, so try not to worry too much about the future. If you would like any printed booklets please email me at with your details, I can also send you information on having a buddy, for your husband and for yourself, a buddy is someone who has the same MPN and takes the same medication, so can give help and advice from the perspective of someone who really understands how it feels. Best wishes, Maz

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