Polycythemia Jak2 negative

[Nozboz]

Hi I was diagnosed with Polycythemia Jak 2 negative about 6 years ago and up until about 2 months ago i never had any symptoms apart from having to have the V section every 3 months. I am not sure if these are some of the symptoms however iIdo get tired a lot more now and as soon as i sit down to relax i want to go to sleep. My heads always feels warm and now both my knee and elbow joints seem to ache a lot of the time. I dont really fully understand what i have and its never really been explained to me by doctors but I guess I never asked enough questions during consultations. Lats time i went 3 months ago i was given a booklet to read and told to read up on myeloproliferative. I see that this has links to leukaemia which frightens me as this has never been mentioned in the 6 years i have been going to hospital. I was told in the beginning that my blood levels should take up to 5 years to get back to normal so am I reading too much into it all and worrying about nothing. Any advice or help would be great please as I am told that my condition Jak2 negative is the one that only 2% of the people suffering from Polycyaemia have.?

[cata]

do not bandage the head, if it isn't hurts

[revfee]

Hi, I'm PV Jak2+ so not exactly the same as you. You don't mention whether your blood counts have got back to normal - or not and that's why you are worrying? I do think that you need more answers than being given a booklet, could I suggest that you write down your concerns before your next appointment and make sure that you get some answers before you leave. Good luck. Fee

[Nozboz in reply to revfee]

Hi fee thanks and I now have a list of questions for my next visit in 3 weeks. In all the time I have ever been going I have only had one occasion when I never needed a Venesection. I think compared to some of you I am quite lucky because its normally around every 3 months. My level rarely changes and is around 0.53 each time.

[MPort]

Hi welcome to this group and I hope you learn what you need. You can read through past posts and this will start to fill in the jig saw for you. But first read the booklet and work out what PV is. When you know this you can ask questions and get answers. Such as what are my red cell counts etc. What should they be. What level is best for me. You can get a copy of your blood results on your next visit.

I am JAK2 positive so i cant comment on negative. You might like to ask to have that test done again. It is a simple blood test.

Many PV people have it for years and years and die of something else. So its progression is usually a long way off if at all.

Also like many others I used to think that any medical problems I get are PV related. But they are usually not and I now keep an open mind about them and get them checked independently.

This MPN group have regular meetings all over the country. They are a wonderful way to meet people and hear their stories. There is usually a presentation. You begin to get a better picture of what PV is and does.

As I have JAK2 positive PV I have it for life so I need to be proactive in my understanding and treatment of it. This took me a while but knowledge is calming and reassuring, the jig saw is half complete. I have a picture of what's going on. I hope you can too now that you have found this wonderful group.

Good luck

Mairead

[Nozboz in reply to MPort]

Hi Mairead I have found this site very helpful so far and a lot easier to understand that the book that was given to me. Thanks again Noel

[Paul42]

Hi

95% of Polycythemia Vera (PV) patients are JAK2 Positive.

I am curious that you were told that your blood levels would get back to normal after a period of time, this isnt usually expected with PV without medication or continued Venesections. Was you originally diagnosed as having secondary Polycythemia?, this is a different condition which can rectify itself if the underlying cause is eliminated.

The chance of progression to Leukaemia for PV patients is very very low, so please try not to worry too much about that, most people live long active lives with PV if treated well.

Paul

[Nozboz in reply to Paul42]

Hi Paul

Yes I dont know why they did tell me that my bloods would level off in about 5 years because looking at this site it probably never will. I dont have medication and only have Venesections around every 3 months at the moment. Its only very recently that I have had any of the known symptoms because up until the last couple of months I have been very lucky as rarely got tired, never dizzy and always full of energy. I have an appointment in a couple of weeks so will ask more questions then. Cheers Noel

[jillydabrat]

Hi Nozboz, being told you have any chronic condition can be very scary and your mind just goes numb. It is only when you get home you think "Damn, why didn't I ask this or get him/her to clarify this". I was diagnosed with PV Jak2+ in 2005 after years of symptoms so I can't really give any advice on your Jak2- diagnosis. As for your bloods going down to normal in 5 years?? this is something you really need to get clarified at your next Haematology appointment. As far as I am aware blood levels can be brought to acceptable levels through medication and regular venosections when needed but I haven't heard of this being achieved on its own. As for progression to Leukemia please don't dwell on it and let it overtake your life. PV & ET can progress to MylioFibrosis (spelling?) or Acute Myloid Leukemia but with regular medical intervention and maintenance many more do not progress than do and this is usually years later into the disease. When I was diagnosed it was 5 years almost to the day that I had been diagnosed with breast cancer so I was more peed off than shocked. For the first couple of weeks you think all sorts of things (most of them bad) but I was lucky and only needed two rounds of venosection and with 1000mg of Hydroxy a day my levels are now normal and have been for months. The tiredness is the most prominent symptom of the disease as well as the joint pain but you do learn to live with it. Try to be as active as you can but if you need to put your head back and take a nap then do it. Your body will tell you what it needs. I hope you get all the answers you are looking for on this wonderful forum. Take care and stop worrying, you will be monitored and any change in blood results will be taken care off

Jill

[Nozboz]

Hi Jill thank you for this detailed reply which is very helpful. I certainly will try and clarify the 5 year thing on my next visit in a couple of weeks but I am sure thats what they told me at the time. The consultant does not understand why I have the condition as I never really had the symptoms up until a couple of months ago.

The only treatment i have is Venesections around every 3 months at my local Hospital. i am not on any medication and have never been offered any so I guess i must not be too bad. My level is normally between 0.53 and 0.55 when I have the blood test. I have only once in the 6 years not had to have a Venesections in the 3 monthly visit.

Sounds like you have really been through it with the Breast Cancer so no wonder you were peed off. I have a list of questions ready for my next visit so hopefully I will listen this time or at least ask instead of feeling that I am wasting there time as I normally do.

Thanks again Noel

[Litefootes]

Nozboz, I'm Jak2 neg as well. When first diagnosed I was blacking out at work, which I've never even fainted in my life. That prompted tons of bloodwork, xrays, CT scans, then bone marrow biopsy. In early days I stayed so so weary, light headed, headachey w/bone pain deep deep down.. As years went by w aspirin & phlebotomies, the symptoms have for the most part, faded. Once my HCT gets higher, I can tell by my hands feeling swollen and hot and purpleish colored. Also a foggy brain.

I hope all goes well for you.

Carol aka litefootes

[Mazcd Partner MPNVoice]

hello Noel, welcome to our forum, I can see you have had some very good advice from the lovely people who are part of our forum. I would advise you to read as much as you can about PV on our website mpnvoice.org.uk. It is very good advice to write a list of questions to ask your haematologist. If it would help I can send you one of our booklets on PV which might help answer more of your questions, please either email me your postal address to [e-mail] or send me a private message via this forum. Best wishes, Maz

[Aime]

Hi Noel, as others have said a big welcome to this fabulous forum where you can get trustworthy medical advice through Maz and tonnes of support, sympathy, understanding and gain new friends who really know what you are going through.

I like you have PV and I am Jak 2 negative so we are in a minority - we must be special or that is what I try and tell myself!

Please don't dwell on the morbid side of our disease as others have said, many people on the forum have had PV for lots of years and they are still here! As Maz says learn as much as you can about your condition so you have some control over your treatment. If you are not happy with answers you receive, ask until you get one you are happy with!

If you can attend one of the forums Maz organises as they are great for information, advice, support and friendship from people who understand exactly what you are going through.

Never sit and worry about new symptoms as worry makes things worse. Insist on answers from your medics or through Maz and if worried or feeling down, post on this forum so we can all send you e-hugs or just an empathy as to what you are going through.

Kindest regards Aime x😺😺

[Nozboz in reply to Aime]

That's very kind Aime thank you x

[Teresa123]

I recently discussed with my Dr if we should determine if I am Jak2+/- after being diagnosed with PV as child before discovery of Jak2 mutation connection. I too am also Negative. Like you I undergo joint pains plus am extremely fatigued. My pain is in my lower center back, right hip, left wrist and most recent my right knee. Your description of how you can fall asleep immediately after sitting is dead on to how I have felt for a few years now. I only drive 10-15 miles max otherwise my sister who I reside with is also co-owner of our home prefers to drive. Because my personal health issues include asthma, sleep apnea, pulmonary arterial hypertension and a second non-related blood disorder plus a history of multiple pulmonary embolism's I feel my doctors are beginning to find it difficult to determine cause for my fatigue and other symptoms. My blood levels after all these years at times can jump around but they stabilize in a couple weeks for months.

[idi75]

Hi, I've just found your post and thought my diagnosis may be helpful.

I'm Polycythaemia JAK2, EXON12 and CALR mutations all negative, EPO normal. As I continue to make too many red blood cells I was diagnosed with Polycythaemia - cause unknown in January 2014. My red blood packed cell volume (PCV) is controlled at below 0.45 by venesection. I'm now diagnosed with secondary Polycythaemia - cause unknown and have a full blood count every 4 months. As soon as my PCV rises to 0.45 I have 1pint of blood removed. This is a simple and painless procedure the same as blood donation for blood banks and now the PCV level is kept stable at below 0.45 the time between venesections has gradually increased to almost a year. The only downside is that the low PCV level has resulted in me being anaemic with my ferritin level being very low (11), this does make me feel fatigued most of the time but apart from regular but short lived 'silent' migraines I have no other problems. I was relieved that my haematologist concluded that I probably do not have a true MPN and no 'nasty' secondary causes were found either. The cause will probably remain unknown but as long as my red blood count is kept at a safe level to minimise the risk of blood clots and I feel well I will cope with the tiredness. I hope you are feeling better now and you find you don't have a 'true' MPN.

[cwayman11 in reply to idi75]

Hi..I'm the same as you but my haematologist won't venesect until nearer 0.5. Old one used 0.45. Don't know if that would help you but thought I would share.

[Loubee27 in reply to idi75]

I'm thinking I may be like you. No official diagnosis. jak2- RBC count high. I go to DR when headaches are bad and thats when they test. 169 last time so 350ml off and never feel this is enough. Still headaches a week later, joint pain, fatigue. Just feel like I've been put in the to hard-pain in the ass-hypochondriac basket. Feeling angry today. Struggling through my days. Sorry, just a bit down and lost.

[Hidden in reply to idi75]

I'm new here can you tell me what a true mpn is

[hunter5582 in reply to Hidden]

A "true MPN" is a layman's term for MPNs that meet the formal diagnostic criteria for the different MPNs. The three Classic MPNs are the Philadelphia negative MPNs - ET, PV, MF. There are other conditions also considered to be MPNs, including the Philadelphia positive Chronic Myeloid Leukemia (CML), Chronic Neutrophilic Leukemia (CNL), Chronic Eosinophilic Leukemia (CEL), and Mastocytosis.

[Krazy-Kat-Mama1960]

I was just diagnosed and not sure if I have primary or secondary, but my fatigue has been going on for quite sometime now. From what I've read so far, I believe it's a common thing. I'm gonna follow your post to get more info if you don't mind. My doctor told me me my WBC, RBC, HEMATOCRIT and HEMOGLOBIN are all high. Then showed me to the door without scheduling a follow up, making it seem like this was nothing. But the more info I get, the more concerned I become.

[Eounak]

I was diagnosed with PV two months back. I'm jak2 - ve and the doctor told me to have a bone marrow test now. Can someone tell me what will I find in that? I'm already half scared.