Polycythemia jak2 negative

Hi all

I had my appointment last week with my consultant and raised a few concerns regarding what i was led to believe in the beginning that treatment would only be for 5 years and then all would be back to normal. As usual I felt rushed and didn't feel there was enough time to ask questions even though I've read that your consultant should discuss this illness with you every 1 to 3 months. The only thing i ever have is about 5 minutes with them to discuss my level which on this occasion was 0.49 so I need to have some blood out as per usual. I did ask about medication and he said that I wasn't at that stage "yet".

I did raise the fact I was told this was a condition that would last around 5 years and he confirmed what I already knew in that it is lifelong condition and had already been reiterated by the helpful comments and advice on this forum.

I told him that I am now getting tired a lot more and seem to want to sleep a lot especially when I am relaxed. he had no answers for this and did not offer any advice about what to do other than exercise.

I told him that my skin is itchy now and more so around my sides, arms and elbows. He looked at my elbows and said it was nothing to do with my Polycythemia so am I thinking i should have red patches or something physical ie. a rash? I am aware this one of the side effects so makes me even more confused as to why he said it isnt.

I told him that my joints are aching now and never did before as well as lower back pain which is annoying after standing for a while. I said mainly my fingers and knees ache the most. He did not say anything and did not offer any examinations or medication.

I asked him if Polycythemia was also known as a blood cancer and he told me yes but not if you are Jak2 Negative which I am. He didn't explain why that would be the case or even tell me the difference. After my appointment I did ask the nurse if I could book a further appointment with him to discuss my condition in more detail but was advised that he will only speak to me over the phone.

I feel I have now no choice but to seek medical advice from a specialist haematologist - does anyone have any recommendations? I have done a bit of research and found a Donal McLornan who carries out private practice as well as NHS.

Thanks Noel

16 Replies

oldestnewest
  • Noel, I am also JAK2 neg. From your descriptions on symptoms you and I seem to be having similar PV symptoms, less on the itching and dead on with the tiredness and pain. I too fall asleep as soon as I sit down. The heaviness of my eyes is intense. This feeling is definitely different that being tired when younger. Please be careful when you drive somewhere. My sleeping seems to be just as bad when I am a passenger in someone else's car.

    My primary doctor and I thought visiting a pain specialist to possibly get me off CII drugs including Fentynal Patches and Hydrocodone would make my life easier since these drugs are highly controlled in the US. The regulations make it extremely difficult for patients who truly need them to obtain. In the past week I visited a pain specialist and Fiscussed the pain in my lower back which I have had for years now and more recently in right knee/left hand. I out right asked my pain specialist if my pain was at all PV related and I was told no. He said that I have arthritis somewhere within my L3-5 lumbars. I am going for an MRI in 2 weeks. After that he told me we'll sit down and discuss results and treatment.

    If you feel uncomfortable with the care you are receiving from your doctor by all means find one you feel is listening to you. Take care.

  • Hi Teresa thanks for the reply and yes the itching for me too is not the worst but can be annoying more. I definately get tired more so now and cant keep my eyes open at times even just watching TV and I feel bad when people are around but I really cant help it. I am fine at work as I am always busy and driving has not been a problem at all even when on long journeys as I tend to have the window open or radio on. Only once I had to stop and had a half hour snooze at a petrol station and then I was fine to carry on. The joint pain I can live with at the moment without drugs and I get a massage every now and again for the back would help. Take care too Noel

  • Hi

    All of what you describe could be symptomatic of PV jak2+ or not. It sounds to me like your doctor is getting confused some between MPN PV and Secondary Polcythemia. 95% of PV patients are JAK2+ but even though its rare than means 5% are not JAK2+ and thats still a lot of people.

    I think your approach of finding a specialist is good, i dare bet people on here will have recommendations if you post where you are from.

    The only thing i would say is there isnt always a treatment that can be prescribed for our ailments, often its about finding whats right for you (the excercise one for example). Once again there will be lots of advice on here what people have done to help aleviate or improve their symptoms.

    Paul

  • Hi Noel,

    Welcome to the happy gang of PVers! Long email bear with me.

    Hope it helps.

    I'm 62, was diagnosed with PV 7 years ago, live in the Lakes. I have a venesection ( like giving blood about every 2-3 months and take a drug called hydroxicarbamide - 2 a day, with which , touch wood, I don't have a problem )

    MPN's ( myeloproliferative neoplasms ) of which polycythemia is one, were classified as blood cancers by the world health organisation in 2008. Having said that. DO NOT WORRY, it's only a name, and patients with PV live over 30 years. Probably longer but no ones classified it that far ahead!

    I decamped 4 years ago from our local hospital where my haematologist was constantly changing ( locums who were clueless re PV) to the Christie in Manchester where the care is second to none.

    It sound to me as though you need to find a haematologist who specialises in your condition - only then will your symptoms be properly understood and your condition discussed with you. I would suggest you find a specialist in polycythemia no matter if you have to travel, you should be seeing someone at least every 8 weeks, I go every 5. Also suggest you ask your GP for a letter of referral for a second opinion to start with, when you do find a specialist. Then you can think about transferring if you want to.

    Specialists in MPNs are becoming increasingly savvy with the symptoms of MPNs, which is great for us.

    Now to a bit of self help:

    The following helped me, it might not work for everyone.

    Please make sure you drink between 2/3 litres of water every 24 HOURS - not in a couple of hours of course. Start with half a litre at breakfast time and carry on every couple of hours or so with a large glass. This will keep your blood hydrated. Water not coffee!

    Get out and walk as briskly as you can for an hour say, every day. Even if you feel clapped out and just want to sit in a chair. Pavement plod if you live in a city.

    Itch. The itch associated with PV is called aquagenic pruritis. It affected me so badly it used to reduce me to tears, and I'm a pretty hardy old bat. Bit like having thrush under your skin, a blowtorch on the outside and a zillion insects biting all at once. It isn't an ordinary itch but you don't say how it affects you personally .......if your haematologist said itching wasn't PV connected he doesn't know what he's talking about - unless you have a rash? There is no rash with aquagenic prutitis. It's worse after bathing, showering, or swimming, if you get changed in a draught , sit in air conditioning, wear tights ( not your problem I presume!) I haven't had a bath or shower for almost 6 years now which works fine, I have a bidet, wash my hair over the bath, and manage with a flannel and a basin. I'm fine and don't pong! Worth trying, even if you think Blimey, I can't not shower. Try it and see if it helps. Have you tried an antihistamine? You could start with piriton and if that doesn't work ask your GP. There is help out there, move on and don't put up with grotty service. This is your life and you have to be your own project manager. Read as much as you can about polycythemia on mpnvoice.org.uk and attend a forum if you can. All info on the superb website.

    Eat healthily and cut out processed rubbish. Maybe cut down on alcohol if you like a few glasses of wine etc.

    Good luck. You'll be fine, honestly, but you really do have to help yourself, and find someone who you trust with your life. It's as simple as that.

    Very best wishes,

    Louise

    x

  • Hi Lou

    Thanks you for this very detailed response as its very helpful. I will certainly increase my water intake as I am not currently very good at that if I'm honest. I wrote a letter to my GP last night asking for a referral to a Dr in London who specialises in this area and will wait a response. If not I will go private as my consultant dosent know enough and my GP has never contacted me again since I was diagnosed 6 years ago and funny enough I have been back to them with problems i now see are linked to Polycythemia but they never picked it up. Thanks again Louise x

  • Hi,

    You're most welcome Noel, I really hope that you find a decent consultant. Life will get better when you do.

    Best wishes,

    Louise

  • Thanks Paul

  • Me again Noel.

    I've just googled haematologist specialising in MPNs and it cam up with an ancient post by the lovely rubyrubyruby asking that very thing.

    One of the replies listed several specialists all over the country which might help although after 4 years things might have changed.

    Try googling " consultants - are there any and is it more beneficial to find one who specialises in MPD's healthunlocked"

    Failing that contact haematology at Guys hospital and ask if they can recommend anyone.

    Louise

  • Thanks Lou I have asked my GP to refer me now by letter and if not I will go private. Cheers Noel :-)

  • Hi Noel, I know it is so frustrating when your consultant appears not to be bothered to answer your questions and I would definitely change your haematologist. I am Jak2 negative and have never been told that it is not a cancer - unfortunately.

    Where do you stay? I think I asked you before but cannot remember the answer. Louise has given you some good advice there. I think as well you need to feel you have some control over your disease and it is not controlling you.

    I must admit my GP fully admits he has limited knowledge of PV but at least he's honest. I keep him up to date! I think by understanding more about my PV and symptoms, I accept my lot and for the most of the time, I just get on with it. I do have my bad days and times I ask this forum for support which I always get in bucketfuls which I am so grateful for.

    I hope this helps you to cope with your PV. Kindest regards Aime xx😺😺

  • Hi Aime thanks for the response again and I am treated in Watford, Herts but my Consultant is at Hemel Hempstead. The staff at the Helen Donald unit in Watford are amazing and always have been when they take my blood. To be honest all thew best advice is on here and I have learnt more since joining this forum than I have in the last 6 years with my Consultant or GP. In fact my GP have never discussed this again since I was first diagnosed and sent to the hospital 6 years ago. Thanks Noel x :-)

  • Hi Noel, this is a coincidence, I am also treated at Hemel Hempstead hospital haematology clinic (I am PV JAK2+). I am very surprised you have found your appointments rushed and uninformative as my consultants there have been amazing, as indeed the nurses. They are general haematologists rather than MPN experts but they do see a lot of MPN patients and so are aware of the latest research and treatments. Who do you see there? My first consultation 2 years ago was very long as the consultant explained the disease and gave me a lot of information to read. In my regular appointments, they discuss the blood work, any side effects of treatment or worries and always follow up with a letter with our discussion and blood counts. Last year, they referred me to an MPN expert that confirmed their diagnosis and treatment plan. The haematology clinic is very efficient, I have blood taken, wait a little in the cafe, and then see the consultant some 45 min later. Have you been diagnosed with Polychythemia Vera (a myeloproliferative neoplasm) or with secondary Polycythemia? If the latter (which is very possible since you don't have the JAK2 mutation) then that is a very different disease, not a blood cancer, with different treatment. Anyway, just wanted to say sorry you are unhappy - I have received excellent care in the Hemel Hempstead clinic and have even recommended them in other forums! I hope things improve for you and you get more clarity when you see a polycythemia expert. All the best, Susana

  • Just literally had a call from my local GP surgery after they got my letter this morning and they will not refer me without seeing me so I now have an appointment next week. Funny how they've never bothered to see or contact me in the last 6 years but now I want to see a Consultant in London who specialises in Polycythemia they have become interested.

  • Ha yeah, i think its called covering their own backs.

  • Good for you. First step in the right direction. Insist on who you want to be referred to and why. Go armed with a written list of questions. Kindest regards Aime x😺😺

  • Hi Noel, sounds like you are in the same area as us. My husband has PV jak 2 + , diagnosed 4 years ago. We go privatly into London to london Haemotology clinic, part of london hospital, and see a fantastic guy called Richard Kaczmarski. He is very laid back and has been amazing for my husband who has not accepted this diagnosis well.

    Good luck

You may also like...