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Polycythemia

Hi, I'm Hannah L A.

I am in the process of figuring out why my red blood cell count is high. I am a 22 year old female. What is your experience with polycythemia?

Thank you!

  • Post #1
  • Tue May 9, 2017
Hi, I'm Donald B J.

I was diagnosed 2 years ago at 41 with JAK2+ PV. I am treated with aspirin and occasional phlebotomy. I was tired all the time so my hematologist sent me to a sleep clinic…apparently apnea can exacerbate PV. Treatment has kept me going, working full time and living life. Good luck!

  • Post #2
  • Wed May 10, 2017
Hi, I'm RHONA107

I was diagnosed 1 1/2 years ago at 58 with PV and the JAK 2 mutation after having a heart attack caused by a clot. I am considered high risk and have been treated with aspirin, hydroxyurea, and phlebotomies. I feel well, work full time and completed my first 5K walk in October. Best of luck to you!

  • Post #3
  • Sat May 13, 2017
Hi, I'm Fran E.

I was diagnosed with Polycythemia 9 months ago at age 73. I had no symptoms and my elevated red blood cell count was found by my cardiologist during a routine check up and CBC. I also have the Jak 2 mutation. It’s controlled now by Hydroxyurea. I go in for check ups every two months now and I feel good. I’ve lost 15 pounds (bonus) and hope to lose a few more. I work part time, this hasn’t slowed me down a bit. Best of luck.

  • Post #4
  • Sat May 13, 2017
Hi, I'm Scott O.

Have you been diagnosed with PV or did you just have elevated RBCs? I was diagnosed with PV, Jak2+, almost 10 years ago at age 30. My hematologist-oncologist actually presented my case at a national conference for MPNs (myeloproliferative neoplasms), because it’s already a rare disease but especially rare to be diagnosed in younger adults. I was getting sick often and having a lot of headaches. They ran a CBC, noticed numbers were off, then did a bone marrow biopsy and aspirate to confirm. I now take 325mg aspirin daily and have routine phlebotomies. I work full-time, still feel run down usually, get sick more often than I should, and have nagging headaches. Otherwise, I’m doing okay.

  • Post #5
  • Wed May 17, 2017
Hi, I'm David M S.

Diagnosed in 2001 after BMB confirmed high HCT due to P-Vera. Had it for years prior but had been self-phlebotomizing through blood donations every 8 weeks for years. Numerous phlebotomy’s (sometimes 5 in 7 weeks) since 2001. Itching went away about 8 years in. Never slowed me down in the beginning but fatigue began showing up after 14 years. Started Hydrea two years ago but it had little or no effect on rising HCT. Has stayed around 55 for most the time. Taking 500mg of Hydrea for five days a week and 1000mg for two days. Numbers looking better except platelets run between 40-90. Had to resume phlebotomy’s with Hydrea. Scar tissue in arms becoming a problem now. Tough to find the right spot and that needle is no small boy. For these 16 years I’ve had two Hematologists, both female, and I wouldn’t trade them for the world. The Lord has been gracious in providing me such good and caring people.

  • Post #6
  • Sun May 21, 2017

I’m now 29 and was diagnosed with polycythemia shortly before my 26th. Tested negative on everything. Only thing left was to do a bone marrow biopsy. Doc wanted to hold off on that. I don’t smoke, drink, not obese and wasn’t taking supplements at the time of discovery. I lift weights regularly but wasn’t doing cardio. I started to do cardio 5-6 days a week and it helped but not to the extent that the doc wanted. Next thing was diet. I cut out red meat all together and that seemed to help the most along with exercising regularly. Their only treatment is a phlebotomy every 3 months. It keeps going up for me but cutting red meat and doing exercises like my doc instructed helped my numbers go from a 17-17.5 to 14’s. I have been out of country for a year now but plan to get checked up whenever I go back to the states in June. Last check I had was a 15.8 back in January before a surgery I had.

Ask about diet and if you are able, what kind of exercise You could do.

  • Post #7
  • Wed May 24, 2017

Adding to my previous post (#7)
I’m male, 5’10 and 198 lbs with 10% body fat or less. Just for reference.

  • Post #8
  • Wed May 24, 2017
Hi, I'm Joseph L S.

I was diagnosed with PV in January 1987 at age 38. Every Monday for 7 weeks after diagnosis I had a phlebotomy. From 1987 to 1992 I was on a low dose aspirin daily along with a periodic phlebotomy. In 1992 I started on Hydroxiera daily until February 2015. I was diagnosed with Myelofibrosis at MD Anderson at that time. I am currently responding well to treatment.

I have enjoyed a full and productive life.

  • Post #9
  • Thu May 25, 2017
Hi, I'm REaton

My advice is to get additional testing, your pcp should be referring you to hematogist. Epo level test and JAK2 mutation gene testing if both are fine the bone marrow biopsy if and if that’s fine you have other causes for blood counts.
PV, JAK2+, Epo levels always low, aspirin and Jakafi 2x daily

  • Post #10
  • Sat May 27, 2017

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