Hello. I was diagnosed over a year ago with a blood disorder polymycemthia. Basically ,my blood becomes very thick with dangerous levels of red blood cells.its a tricky deal. I have learned s great deal ,about this disorder. Still would be great full for any information from you may have. I appreciate the opportunity to post here . I hope and pray that each person reading this ,has a profound recovery , and a full ,rich mean full life . Jack Phillips
Jack I’ve been dealing with this for a number of years. The most help I’ve gotten is from a discussion group on Facebook specifically for others like us. It is a bit tricky, I tell my friends I’m a walking chemistry experiment, but all in all they’ve done a good job of taking care of me. Side effects of the meds are a constantly shifting landscape and I doubt any two of us are the same. But still vertical and still enjoying at least some of my life.
I have been dealing with PV from 2010. It has been bad at time, but usually under control. The worst thing probably is most Doctors do not understand it. I was on a chemo drug for around 6 yrs. Lots of side effects. I am fortunate to have been on Jakafi now for almost a year, and I think I am better than I have been in years. Seems more new stuff is happening now. Stay informed of new developments in treatment.
I have had polycythemia for 5 years! I have blood drawn
every doctor’s appointment and every scheduled lab appointment!
I became over weight due to over esting and no activity!
I lost 33 pounds and have been exercising! Sometimes I am short of breath, ostensibly due to the disease! However,
since exercising and losing weight my numbers are down
and the last lab date, I did not have blood drawn!
Not sure what of the correlation but it is the only change I
Made! Worth a try for all of us!
I’ve was diagnosed in 2010 when my blood count was up to near 20. I’ve had no symptoms other than the blood count. Been treating it with phlebotomies. We started at monthly. Moved to every quarter then to every other month. Now at every 6 weeks. Blood count now steady under 16. Just find a treatment interval that works for you and get on with life.
Hi Jack, glad you reached out about polycythemia. I was diagnosed with polycythemia vera in 2007 at age 30. I am a more rare case due to my younger age. The fact that you were diagnosed before a “thrombotic event” (blood clot or stroke) is a blessing. I have been doing routine phlebotomies (blood giving) ever since my diagnosis as well as taking aspirin to thin my blood. Symptoms vary greatly from person to person. I deal with dizziness, headaches, fatigue, and often get sick when bugs are going around. I also experience burning sensations on my skin. Thankfully, I have not yet required meds to lower my blood numbers. There have been exciting advancements in research for meds that help PV, so the future is bright. As my doctor once said, you’re more likely to die with PV than from it. Also, most people in your life and around you will never understand this disease, but don’t let that discourage you. There are a few out there who know what it’s like to live with it. Blessings, Scott
I have had PV since late 2008. Attempts to manage it with hydroxyurea not successful as I couldn’t tolerate the side effects. Phlebotomies were used to manage it with limited success. There was some concern that I might have a stroke. I had some episodes of vertigo. I itched all over constantly. Around 3.5 years ago I was put on Jakafi and the results have been dramatic. My blood numbers are essentially normal. The only downside to the Jakafi is weight gain. I am down to quarterly check ups with the hematologist.
I was diagnosed with Polycythemia Vera in 2000, have been taking Hydroxurea every day for almost 18 yrs, with periodic phlebotomies and for the most part, lived a normal life. In the last few years started experiencing long term side effects of Hydroxurea, lower leg ulcers that dont heal unless I stop the Hydroxurea, as well as reduced effectiveness of the drug. I stopped taking the hydroxurea and jakafi in late December so an ulcer would heal, all of my counts climbed, then by God;s grace in early January started eating food seasoned with tumeric and frozen lemon peel – all of my numbers came down, within a week of starting these two things (the lemon was planned based on something I read, the tumeric was not planned, but was by God’s grace, as my sister came to stay with me for a couple weeks and was seasoning our food with tumeric) after my sister left, I continued with the lemon thinking it was the cause of my numbers going down. Within 2 weeks my platelet count rose to 2.7 million, we couldnt figure out why, and then my sister remembered she had been seasoning our food with tumeric, so I started using the tumeric again. Praise God my platelets went down to 920,000 with just 10 days of eating the tumeric in vegetables and other foods. My other counts went down also, several in the normal range, and others much lower than they had been. Will continue eating the tumeric and adjust how much I eat when my platelets are in normal range, my Doctor has ordered weekly blood tests to monitor my counts. Cant say it will work for everyone, and your doctor will not like you trying it at first, but like my doctor said, he cant argue with the numbers, it is worth a try for anyone before taking Hydrea (or Jakafi, which I took for five days and could not function on it). These drugs are poison and will cause serious side effects sooner or later.