Has Polycythemia Vera (PV) become a disease of the middle-aged?

[@lauraw3338]

I was diagnosed with PVera when I was 31. I am now 51.

[@maridithtorres9604]

Hi 👋 thank God u managed well your condition 😊. May i know what is your daily diet? From breakfast to dinner? And what you drink for your safety? Thank you so much for your reply. Greatly appreciated.🙏🏿

[@123263844589215]

I’m now on my 31 and diagnosed Pvera can you share your life style during 20 years with Pvera

[@aloksahu8869]

R u take medicine life time 🙂

[@rizalineverdadero2852]

hi.what is your diet?medicine also.thanks

[@rizalineverdadero2852]

my husband also diagnosed last July 10.blood waste 3 times since he diagnosed but his bp go down to 90/60 he is taking hydroxynauria 3 times a day monday to thursday and during Friday until Sunday 2 capsules after breakfast and 2 capsules after dinner

[@Ida-Adriana]

Try Serrapeptase or Lumbrokinase

[@krisw8597]

I have had it since my early 20s, now I’m 50. I keep up with my blood donations and that helps.

[@Kenny-bj2zq]

How do you handle low vitamin D levels? I pretty much average a blood letting once every three months to keep levels in check

[@krisw8597]

@@Kenny-bj2zq Hi, thanks for asking, I take a Vitamin D supplement everyday purchased from the Vitamin shop. Plus I get outside in Sunny Fl and ride mountain bikes all through the area. I also take Vitamins such as multivitamin, vitamin C, magnesium, and a B series supplement. All work pretty good to keep me balanced and in shape ready for the ride and my strenuous job. Hope this helps!

[@JRodgers-m7p]

Diagnosed at 41 now 63 have to follow a good diet exercise and take the bad days with the good like everyone else

[@jobarrington3075]

I was diagnosed at age 50. I'm now 61

[@kcalise3948]

No doctor has ever asked me any questions regarding lifestyle except smoking. What about nuclear testing “dyes”, angiogram dyes, workplace hazards, sleep apnea, and on and on. We want cures not toxic drugs.

[@420Gold]

I was diagnosed with ET at 24. Only 32 now

[@420Gold]

I was diagnosed solely because of a random CBC done, mostly out of curiosity to see my results. If I hadn’t done this, I probably would still not know, as I’ve had no reason to actually be checked.

[@bobbirice4420]

I have high RBC, high Hemacroit and high for 8 months and feeling so fatigued. now my úric acid is up and I have horrible headaches, bone pain, chest pain and my Dr won’t refer me to a hematologist. I’m only 48 and my life has changed since last December I can’t play with my dog as I used to and these chest pains are worrying me . Not sure what to do.

[@JazzySerendipity]

I asked for a referral to a hematologist and was denied also. My labs have shown High RBC, High Hemoglobin, & and High Hematocrit for YEARS. Fatigue - itching- and other symptoms. I called a Hematologist office on my own- asked them to look up my labs. I was given an appt. Just had today- dr is not ruling out PV. Ordered an EPO and CBC w/ differential. He said it could be I have some oxygen deprivation- I have Pulmonary Fibrosis but O2 STATS have been above 96% except at night but still above 89%. My CBC came back and showed the usual. I am waiting on the EPO result. He said it may help but said he has very low expectation of PV. Asked me why I thought I should see him and went on and on about why my labs were fine. Yet ordered labs and talked about JAK2 but did not order.

[@bobbirice4420]

@@JazzySerendipity so I finally called on my own City of Hope and they booked me right away Thai week The Dr said my tests were not that bad, However as I told him I feel horrible and I’m desperate so he order CBC EPO Jack2 MNP and another that I can’t recall so I’m currently waiting for results which they said it should take 7-14days

[@shaynarich6635]

​@@bobbirice4420update?

[@LP-km7gj]

@@bobbirice4420 I am seeing the hematologist tomorrow for high red blood cells, low EPO. Wondering how high your levels were and what the outcome was?

[@btudrus]

stop eating sugar and plants in general. try fasting.

[@KyKane]

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