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Treatment

Posted , 4 users are following.

ellen68007
ellen68007

What treatments are there for PV. I have had so many tests since July 2015. I have recently been referred to a Hemotologist who thinks I have a secondary PV. I have 3 more tests ahead of me before a confirmation of P.V. has been confirmed. Has anyone had red face, hands and feet? I also feel light headed at times. My blood counts have been very high so my primary doctor has had me do phlebotomy. For some reason the Hemotologist has requested I don't have any more until a firm diagnoses is made. This decision has me a bit concerned because my blood levels now are very high. I have until Feb. 12 to see the Hemotologist. I was curious as to what kind of treatments are available for this blood disorder. 

0 likes, 11 replies

11 Replies

  • james03855
    james03855 ellen68007

    Posted

    You can have phlebotomy to lower your red cell count to the correct level for  men the figure is .45 slightly lower for women. The medication to kill the red cells and platelets is usually hydroxurea together with warfarin or aspirin to thin the blood and prevent blood clotting. An important thing you must do is ask questions of the nurses and the consultants. Ask do you have Pv or Pv rubria Vera and have him explain the difference. Then stick with the site and educate yourself to all the things to avoid eg don't have a hot bath or shower because it normally leads to itching all night. 
    • ellen68007
      ellen68007 james03855

      Posted

      Thank you James for the quick reply. I will ask questions when I see the Hemotologist Feb. 12th. My bone marrow aspiration came back as a negative. I have had several tests. My red cell count has been very high and to date have had two phlebotomy' which really worked. The homotologist requested that I do not have any more until these last 3 tests are complete. That being a sleep apnea test, a pulmonary breathing test, and ultra sound on my heart. She only put me on an aspirin regiment. It's been a month now since I have seen her and a bit over 3 weeks before I get to see her again. She sent my blood samples away for another opinion. I have already had this done but she wanted to repeat this test. It takes a long time to get the results back. That is why the long wait. I just worry that with this long wait that my red blood cell count will be off the top. My question to you now is would hydroxurea be incorporated with a phlebotomy regiment? Again Thankyou so much for your help. It's much appreciated.I will stay with this site for sure!😊
  • peter98873
    peter98873 ellen68007

    Posted

    Having been recently diagnosed with PRV you will find that you will be engulfed in different tests to fully diagnose the depth of your illness, and to get you onto the correct regimen, for you,   Remember, each patient usually suffers different symptoms and is treated accordingly.  Trust your haematologist and team to act correctly on your behalf.  They are experienced professionals.  PRV is a rare blood disorder and it is only in more recent times that much has been learned about it with research ongoing.

    Hydroxycarbamide (new name for h/urea) is not usually prescibed with venesaction but really that would depend on you medics.  Although I have suffered PRV for many years I would not recommend any of my treatments for you or for anyone else.  Contributor James offers you some sound advice.  You can type Polycythaemia into "Google" and learn a great deal of the what PVR is about from one or two of the very informative sites that are available.  These are posted by very knowledgeable professionals obviously with great experience in dealing with the problem.  Do not be too concerned with the delays you are encountering, all will unfold in due course.  Your blood counts can vary considerably from time to time, but it is surpriising how resilient the human body can be.  Don't be reticent to contact your doctors if anything really troubles you.    

  • james03855
    james03855 ellen68007

    Posted

    Take Peters advice and have a look on this site for Harrishill as he usually gives good advice also. 
    • ellen68007
      ellen68007 james03855

      Posted

      I want to Thankyou for your input! So glad I found this site!!! This is all new to me and I can tell you after sooo many tests since July, I feel at times I am wearing down. I know I need to have these tests but in the interim I tend to get worried. So glad I can ask the ones that have been there and done that. Most of my friends and family here in Canada have never even heard of this!!!! Then my family asks me why so many tests. What is wrong with your blood? Hard for me to explain because I don't know for certain myself! I want to thank Both you and Peter for giving me so much information. Must admit I do get scared at times. 
  • paul250360
    paul250360 ellen68007

    Posted

    Hi Ellen. Really good advice from the guys.

    l was diagnosed with PRV when i was 30 and now am approaching 56. l lead a normal life with just a 3 monthly phlebotomy and a daily aspirin and a yearly check up with my haematologist.

    It isn't surprising that your family and friends haven't heard of this type of blood condition as it is pretty rare.

    Try and keep yourself as fit as possible and drink plenty of water.

    cheers

    Paul

     

    • ellen68007
      ellen68007 paul250360

      Posted

      Thank you Paul. I think the ones I have reached out to has already made me feel relaxed. Sometimes Doctors just don't take the time to go into the depth of explaining what my problem is. I have been told that my blood disorder is a mystery. Due to many tests coming back showing nothing. Even the bone marrow aspiration showed a negative. My red blood cell count is high. Therefore two phlebotomy's. Aspirin until there is a true confirmation. My face, hands and feet are red. I get itchy burning sensations. I was told on this forum to be patient and not to get upset with the long wait to go back to see my haematologist. Sure makes it nice that know I can reach out and ask some questions and feel I am not alone. Nobody that I talk to here in Ontario, Canada has even heard of this. Thankyou for your reply

      Ellen

    • paul250360
      paul250360 ellen68007

      Posted

      My pleasure.

      l remember back 25+ years - that bone marrow biopsy was the most painful thing l've ever had done to me - they only gave me a local aenesthetic beforehand. It was however the defining diagnosis of PRV for me.

      Hopefully you do not have PRV and whatever it is is something minor and just passing. l've never really suffered from burning or itching or even the red face - for me it has been a minor inconvenience except when l snapped my achilles 5 years ago playing basketball & the PRV helped bring on a DVT which could have killed me but all good now and have even returned back to the court !

      cheers

      Paul

    • ellen68007
      ellen68007 paul250360

      Posted

      Thank you Paul! I agree of all the tests I have had it was the bone marrow aspiration that was painful. I knew I could not move and I did not BUT somehow my Doctor knew something was wrong. He did not put enough freezing in. Ouch! Three more tests to do then finally there will be a diagnosis. The haematologist has a suspicion it's secondary. I have to see a respirologist and be tested for my lung function. A sleep apnea test and an ultra sound on my heart. On December 23rd I ended up in emergency. I was driving, it was pouring rain. I was anxious then I felt I could not breathe. I felt faint. I pulled over on a side road and quickly took 2 aspirin and water. I made it home but passed out at home. 10 hrs on emerg and they took me right away. Blood work, heat monitor and cat scan. Findings were very small blood clots showed up in my left lung. The internist who I know personally immediately over ruled the haematologist and took me off the low dose aspirin and prescribed a blood thinner. Gave me 3 to take before I was discharged. It sure has been a long journey since last July when routine blood work indicated a problem. My Doctor who is amazing said this is a mystery. Now I have been referred to a haematologist. Saw her once and now just getting the three more tests behind me then hopefully Feb. 12th I will know for sure. I will keep you guys posted. I appreciate this forum. Has helped me so much!!!!
  • peter98873
    peter98873 ellen68007

    Posted

    Well Ellen, you certainly seem to have been through the mill as they say.  I think you have done very well and handled things splendidly.  From the forum I suspect  Paul is in a similar situation to myself.  He seems a very considerate guy and very practical. Fortunately I have never suffered from spinal bone injections but this is probably due to the fact that I make my thoughts known on this.  Your tests are getting you sorted and it will not be long before you will be fully diagnosed and treated.  I would concur with rhe comments made to you at the hospital about you having PRV, it is very possible.  If you have not been told already blood clots and strokes are known features associated with PVR so it is not surprising that you may have suffered from one or the other already.  Your examinations have brought these to light and your treatment will surely include medication to protect you from these effects.  Properly cared for, you should have no further problems, and it does seem your medical team is on top of what is needed.  Maybe you will be able to relax a bit now and enjoy life a little more.  There are new medical treatments in the pipeline but these are not yet ready, so you can look forward with some confidence that things will only improve.

    Incidentally, aspirin too is a blood thining agent but acts less rapidly than perhaps some other drugs available to the medics.  Take heart, you are winning.

    • ellen68007
      ellen68007 peter98873

      Posted

      Awwww Thankyou so much. Best thing that has happened to me is this forum that I just stumbled across. Strange that the ones I have shares this blood disorder to lives miles apart and yet within a very few days I feel I am not alone. Someone out there understands!!!! Nobody here that I have talked to even gets this. My family and kids don't understand why their Mother is going through so many tests since July. Two Doctors saying my blood disorder is a total "mystery". I guess I have been a challenge but I know in my heart what it is. My symptoms are so classic with Polythermia.   On the 23rd of December when my daughter took me to emergency because I found breathing hard and was hyperventilating. Passed out. After blood work at emergency and heart monitor, followed by a cat scan on my lungs it showed tiny pea sized clots in my left Lung. Blood work showed high levels. I told him the latest and he over ruled the heamotologist and immediately put me on blood thinners. Aspirin he said was often the choice but for now he felt this is what was needed. Said my heart was fine but it was working overtime to pump the thick blood. I was sent home the next day with a heart monitor that I wore for 24 hrs. Now my next step is I have an appointment Friday to see the Doctor for breathing test. He is a respirologist. Will keep in touch with next step. Whe www this feels great to open up.
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