what is the difference between secondary and Primary Polycythaemia.

[StanM]

I was recently diagnosed with primary Polycythemia with a Jak2 positive test (July 2012) I HAVE already had 12 lot's of blood taken (12x480ml) off and I am know on hydroxycarbamide.

I am looking for help information in plain simple English

Thanks

[geordie]

Hi Stan I was diagnosed in November 2011 and like you had blood taken on a weekly basis and on 1gram Hydra per day. I was very weak and felt quite ill during this period. However, as time has moved on I now only have blood taken between 8 to 12 weeks which has helped. I get very bad fatigue and with that quite a lot of pain (like flu pains in muscles joints etc). I have progressively got used to changing the way I live to adjust to my fatigue. I was a very active and had a stressful job. I was lucky that I was able to retire on an ill health pension and I am now getting used to living with little activity although I have just started to do a little swimming, I walk and I have an electric bike. There is light at the end of the tunnel you just have to take it slow and adjust to what you are able to do. I am glad you have found this site as it helps to read about other peoples experiences and then you do not feel so isolated.

take care and best wishes

[StanM in reply to geordie]

Thank you for your reply

[babbittybumble]

Hello Stan, If you go on to the MPD Voice website you will get the correct and very useful information.Hope this helps. Bye

[StanM in reply to babbittybumble]

Thank you for your reply

[Aime]

Hi Stan, As others have said the best place to get information is the MPD Voice website and there is great support there from docs. This website has great support from fellow sufferers so you have ended up in a good place. My polycythaemia was diagnosed in July 2012. I am JAK negative but still have not got to the roots of what kind of polycythaemia I have - all I know is I have got true polycythaemi, i.e. definitely too many red blood cells in relation to the amount of fluid. I don't find my haematologists are very knowledgeable and I am at the stage now I go in armed with my research and list of questions to ask! Once I get some more tests done, I will be looking for a second opinion which you can also get advice from on MPD Voice. I find exercise does help as does drinking gallons of water but before my venesection (which was just on Friday past) my fatigue was REALLy bad! but feeling better today. Take care and best wishes - there are lots of friends on this blog.

[StanM in reply to Aime]

Thank you for your reply

[Zapnoodle]

medtextfree.wordpress.com/2...

Hi Stan: I googled some terms having to do with the question you presented and have found the link noted above that may help you out until you get the answer from the experts. As you say, it is easily understood and presented in plain, simple English. I took an excerpt from this link that explains in brief some of the differences between primary and secondary PV. I am looking forward to hearing from the pros. But in the meantime, I hope this helps.

"Polycythemia is characterized by an increase of the total body red cell volume. It exists in the primary form, polycythemia rubra vera, a clonal neoplastic disorder, and in secondary forms due to appropriate or inappropriate increases in levels of EPO. Such increases may occur, for example, in persons residing at high altitudes, in heavy smokers, in patients with cardiopulmonary disease, and in patients who inherit abnormal, high-affinity hemoglobins. Although primary and secondary polycythemia are entirely different disorders, they are discussed together here because the patients’ presentations may be quite similar, and the correct diagnosis is of great importance. Primary polycythemia is characterized by increases not only of the numbers of red cells but also of granulocytes and platelets and by splenomegaly. These findings are not usually present in secondary polycythemia. Control of both types of polycythemia can be achieved by phlebotomy. Myelosuppression is usually used only in primary polycythemia, where drugs such as hydroxyurea, busulfan, chlorambucil, interferon, and anagralide may be useful in controlling not only the hemoglobin levels of blood but also the concentration of other formed elements."

[StanM in reply to Zapnoodle]

Thank you for your reply

[Michael56]

Hi Stanm

I too have PV, Jak2 and found out 6 years ago, just before my 50th birthday.. Lots of ups and downs but in the last twelve months things have really settled down, stick with it, the hydrox tabs help that I take every other day. Life does take on a "normal" trait eventually and hospital visits are every three months now from 2 times a month, the fatigue comes and goes but exercise does help, good luck & keep your chin up !

[StanM in reply to Michael56]

Thank you for your reply

[jane13]

as i understand it primary PV is when you have aquired a mutuation in your genes that signals your bone marrow to produce abnormal quantities of blood cells (eg red, platelets), it can't be cured. But you can generate some of the same blood cell imbalances due to lifestyle, without the genetic mutation eg smoking, poor diet and this "secondary" PV can be cured if you change your lifestyle. You and I have primary PV with the genetic mutation. Think I have this correct....

[StanM in reply to jane13]

Thank you for your reply

[Aime]

Hi Stan, I have got primary PV - well I think that is the diagnosis which has been reached eventually after blood tests, cell mass test, ultrasound, ct, chest x-ray. I had a bit of scare over the last few weeks as I started a new symptom for me - night sweats. So have just had the all clear with ct scan so hopefully now I will only visit haematologist about 3-4 times a year as my gp and local hospital have agreed to keep an eye on blood counts. My platelets had also started going up so will still be monitored too. Only treated by venesection so far. I am Jak2 negative but I was told there was another gene mutation which they don't test for because it is too expensive to do test and result would make no difference to treatment. I haven't had bone marrow biopsy, told not necessary at moment unless things change. This forum is great for support, info, etc. Take care.

[Tudor55]

I too have secondary polycythemia diagnosed last May..I have to go back to the hospital next week to see a consultant heamotoligist as my blood levels were high on the last two blood tests..I do not know what they will do if the levels are still high and it is worrying me a bit.They are going to fast track my results to get them on the same day.I suffer from severe anxiety so the call from the hospital out of the blue to go for further tests did not help my anxiety levels at all...Just need some reassurance please as I feel so ill in the mornings and not sure if it is the anxiety or polycythemia making me feel like this...