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polycythemia vera

Posted , 19 users are following.

bikerflorist
bikerflorist

i have been living with this for 2yrs now and i must say with no help from my doctors, i know its rare and not many women suffer with it but are there any on here ? am getting a bit desperate now feeling really un well 

thanks 

5 likes, 101 replies

101 Replies

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  • clem19079
    clem19079 bikerflorist

    Posted

    Hydrea and Asprin are what I take I also from time to time get venesected a pint at times. Tell your doctor to refer you , in fact demand it. Hydrea is a chemo drug. Your symptoms can be eased not cured. If you smoke or drink you have to quit. I liked my brandy now I no longer miss it. Find out why your doctor is taking risks with your health. Do not take no for an answer. Pv can create all kinds of problems for you. If you don't get satisfaction change your gP . I'mean in Belfast and I have no choice but to attend hospital every 6 wKs. Let me know how you get on. Feel free to ask I will reply as best I can. Take care
  • anne1609
    anne1609 bikerflorist

    Posted

    Hi I am living in UK as well. I have had PVR for 2 years as well so know what you are going through. Have you been having vena sections?I am taking medication every other day now and although feeling very tired am still working full time. How are you doing?
    • anne1609
      anne1609

      Posted

      Hi whilst answering you I see you have already answered most questions
    • clem19079
      clem19079 anne1609

      Posted

      Bain of my life. It has created all kinds of problems for me. I was born with it and for yrs i couldn't figure out why I couldn't hold down a job. Headaches all the time tired just been diagnosed with carpel tunnel and I may have diabetes as well. But I keep smiling.
    • bikerflorist
      bikerflorist anne1609

      Posted

      i havent answered any anne think that was clem lol i am on asprin and blood taking, but feel so ill had a head pressure now for nearly 3 weeks, i am self employed so have to work to earn the money but my god its hard at the min 
  • james03855
    james03855 bikerflorist

    Posted

    Have PV for over 3years As clem 17079 hydrea urea and warfarin also vena section as necessary. The trouble is that the consultants are not sure of the way the Jak mutation works. They control the red cell count and the platelet count and seem to leave the many and varied side effects to GPs who can be not up to speed with this illness.My side effects also varies from to week for no apparent reason. These include aching lower legs, tingling restless legs, itching especially in bed bad enought to lead to no sleep. My GP is very good and prepared to try to solve the problems. I know that there are ladies on the forums and they will respond in time. I agree with clem19079 that you should be seen by a consultant. I'm sorry that your illness is getting you down but people on the forums could help. All the best for now.

    • clem19079
      clem19079 james03855

      Posted

      Here I hope is the answer to your prayers for restless leg. Until your doctor prescribes quinine you can get it via Schweppes tonic water has to be genuine Schweppes as it has quinine in it. Over the day drink a bottle of it Everyday. Another thing I learned and was taking this as well , French mustard. Try one or other or both. They bloody hard work getting down but believe it or not , for me it worked now I on quinine. My leg still feel a bit stiff but better that than what you going through. Also basin of water as hot and as long a you need to . Hope this helps
    • bikerflorist
      bikerflorist james03855

      Posted

      thanks james am under a consultant but he does not seem to know much and i always see his under study, its this bloody headache or pressure in my head its doing my head in now, i am on asprin and blood letting, can i ask what level with you do they take blood out of you ?
    • james03855
      james03855 clem19079

      Posted

      I will try the tonic (no gin) water. I downloaded the MPN update newsletter and on it gives you an idea of the work and studies being done
    • clem19079
      clem19079 james03855

      Posted

      I only query things as they happen to me. I don't really wanna know.
    • clem19079
      clem19079 bikerflorist

      Posted

      I get those headaches bloody awful, tried everything , amazingly the only thing I take that works is neuropHen. 2 or 3 headache gone in under an hour. If they work keep a strip with you at all times .
    • james03855
      james03855 bikerflorist

      Posted

      Whenever the red cell count is at .45 or above they take blood. I understand that for females it is .41. What does GP say about your headaches?
    • james03855
      james03855 clem19079

      Posted

      I do know the feeling but the damned itch at night is really annoying. Taking sleeping tablets leaves me off colour the following day. My high blood was missed for a month during which I had phlebitis cellulitis and finally DVT then it was diagnosed

    • clem19079
      clem19079 james03855

      Posted

      He thinks their linked to vertigo. I know a few folk with vertigo when I mention the headaches they say they don't get them. I'm on a lot of high strength pain relief. So was surprised when over the counter neurophen took the presure oft. It's gross , feels like my brain trying to get out through my skull. Very nasty
    • james03855
      james03855 clem19079

      Posted

      For the weird feeling in my feet and lower legs I was referred to a neurologist and had tests done and showed up damage to nerves in legs feet and hands. During meeting with the consultant he did another few tests and told me that my sense of balance was affected.
    • bikerflorist
      bikerflorist james03855

      Posted

      my lowest blood count ive ever had is 62, my gp gave me vitamin b12 tablets to take then after 4 days felt so ill then i reliazed b12 elevates the red bloos cells so stopped taking them, and phoned my gp and still waiting after 3 days for gp to ring me back
    • james03855
      james03855 bikerflorist

      Posted

      What part of the UK are you in. I did warn you to watch all that thr Gp gives you. I think that your GP must have a lot to answer for. You should be asking the GP what the underlying cause of your Polycythemia is and why he is not investigating that also why you are not getting innohep injections to prevent clots. At a level of 62 I think that you deserve to be treated better. 
    • bikerflorist
      bikerflorist james03855

      Posted

      thanks for the reply james, am from south yorkshire what is innohep injections ? my levels are normaly between 70 and 78 is this bad ? went to see consultant today getting blood letting twm, but there is no funding for any meds because am not jak 2 gene what ever that means 
    • james03855
      james03855 bikerflorist

      Posted

      If yoU don't have JaK2 gene mutation then you must have some underlying illness. Innohep is an injection to dissolve clots and so avoid pulmonary aneurisms. If your packed cell count is the figures you posted they are high I think .41 for women 
    • bikerflorist
      bikerflorist james03855

      Posted

      if am honest am giving up, think i need to go back to gp to send me to someone else, all i want is the pressure of my head and to have my enegry back not asking for much, but hey ho just carry on 
    • james03855
      james03855 bikerflorist

      Posted

      You will need To tell him Or her that you have polycythemia not polycythemia Vera and the underlying cause should be diagnosed so your condition will be  relieved that is the difference between the two. PoV cannot be cured but polycythemia caused by underlying condition can

       

    • Zapamania
      Zapamania james03855

      Posted

      Hi James I see your post is old but your topic is my problem.  I am having weird feelings in my left leg & foot.  I'm thinking there is damage to my nerves.  Is there anything you can do or is it permanent?  I'm assuming it's from the Pv. Linda

    • Zapamania
      Zapamania james03855

      Posted

      Hi James I see that your post is old but I'm new here and reading everything.  Your side effects you mentioned are mine.  Aching in lower legs, tingling restless leg not every night.  I was wondering have the symptoms resolved and are you on any meds?  Linda

    • james03855
      james03855 Zapamania

      Posted

      Yes I did have the tingling etc.They thought that it could be the hydroxide urea tablets. Unfortunately I have progressed to lung cancer and all my meds have changed. I hope antihistamines help with the itching and you have read all about not taking hot baths showers etc. During the time of venesection and medications the restless symptoms eased. I wish your well and hope your treatment goes well..
    • clem19079
      clem19079 james03855

      Posted

      Sorry james to hear what your going through and my thoughts n prayers are with you. Can i ask, is pv or hydrea a suspect in you being diagnosed with cancer. I joined this site a couple of yrs ago and despite my gp and consultant telling me the possibility of devolping cancer is slim, i am hearing different on this forum of folk developing cancer to often and once is to often . I had a lot of discomfort last night for god knows how many nights, i have stopped counting. Antihistamines proscribed buy you docter work better than the shop bought ones, i am now taking 2 or 3 ceterizine a day. Even then i have i still suffer a lot of itching especially my nose and torso. Can be very stressfull at times. All the best.
    • keith28441
      keith28441 james03855

      Posted

      Hi James

      Just read your last post to Zapamania. Like Clem, I too am very sorry to hear your news. My thoughts and prayers are also with you at what must be a difficult and stressful time for you.

      With very best wishes

      Keith

    • Zapamania
      Zapamania james03855

      Posted

      Hi James sorry to hear about your new diagnosis.  I am wondering as is Clem do you or your Drs suspect that the Hydroxyurea had anything to do with the progression to lung cancer?  I am on Jakafi about 3 weeks and according to my new blood work it doesn't seem to be working.  I'm becoming very frustrated and scared.  I'm wishing you all the best.  This disease we share is horrific and now you have more on your plate.  Hope and prayers to you.

    • Zapamania
      Zapamania clem19079

      Posted

      Hi Clem I just read your post to James.  I feel like you.  There seems to be quite a few cancers cropping up.  Is it the drugs or Pv?  I haven't been itching too much but just found out my new blood counts.  They are not looking good.  I am on 10 mg of Jakafi a day for a few weeks.  I couldn't tolerate the 10 mg 2x day due to body aches.  It's not working.  In 8 days my wbc went from 7.3 on 11/1 to 18.9 on 11/9.  That's not good.  I am starting to feel hopeless.  Take care.  Linda

    • clem19079
      clem19079 Zapamania

      Posted

      Its trial and error, it cant happen soon enough for you but they will eventually find the right combination. I've been on this site a fair while but as you say , there seems to be a lot of cancers appearing on this site. That said , i am finding it a bit depressing and making me anxious. So i will likely be giving this group a miss for a while. One of my kids died in a hospice of cancer in february so it hits home when i hear folk on here are developing it.

    • Zapamania
      Zapamania clem19079

      Posted

      Hi Clem boy you sure have had your share of despair.  Sorry about your child.  I can understand you taking a break.  It upsets me also.  I hope you find your peace from all your sorrow.  Sincerely. Linda
    • clem19079
      clem19079 Zapamania

      Posted

      Have a nice christmas n new yr girl. That goes for everyone in the group
    • Zapamania
      Zapamania clem19079

      Posted

      Dear Clem wishing you the same.  I know it's hard but I guess we have to try & make the best of it.  Peace & hope  linda

    • james03855
      james03855 Zapamania

      Posted

      Thanks to all who sent best wishes. I haven't asked the doctors about the progress to lung cancer as I was a smoker for many years so they tend to stop investigating there I also worked with asbestos but they still stick to the smoking. I am sorry to hear of Clem's son a terrible blow.

    • keith28441
      keith28441 clem19079

      Posted

      Wow, Clem I am so sorry to hear this sad news about your son. That's hard to take. My thoughts are with you too.

      Take care

      Keith (from just across the Irish sea)

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