Signs of Progressive Polycythemia Vera

[@elizabethkates670]

Ive had polycythemia since 1996. I am managing it with daily aspirin. I know when I am not feeling well and get blood draws. I haven't had a bone marrow test in 5 years. The symptoms are there. The itching and the sweating can be hard. Restless leg is pretty bad sometimes. But when I try to tell people wgat I deal with they act like im a hypochondriac.

[@MalikaBourne]

Thank you. This explains a lot. #1 I was never making up my complaints. (I was not crazy.) I was diagnosed 4 years ago. I moved to asea level. The hematologist dropped the ball, and I had no treatment for 2 years - my labs and symptoms did not make sense to him. Now I have the best care and on Jakafi.

[@Lyn620]

Thank you for posting this! It’s very helpful. Xo

[@eddiespagetti8395]

I might have this , my hemoglobin is at 207. Doctor said lay off testosterone for a month and re do blood work. Thick blood is not good and we have to rule out this disease and get to cause of my high levels

[@gtr1963]

got diagnosed w this in 2005 at 42 yrs of age.. Ive been giving phlebotomies ever since. Dr said in 6 yrs he'll switch from phlebotomies to hydroxurea as he said giving blood will do me no good at that age, years ive had it..

[@Fireguy65]

Hey, I’m 30 and was diagnosed. Curious, do you find that phlebotomies eliminate the majority of symptoms or health issues

[@gtr1963]

@@Fireguy65 phlebotomies keep me alive.. the only symptom i have now is fatigue from the blood giving.. in the beginning i itched like crazy after showers but that subsided in later years.. One issue i dont like is, my teeth have almost all chipped out. I learned that having PRV for so long now and giving so much blood, weakened my teeth to where they broke off. im gonna get an upper denture so i can be seen in public

[@aarhav9193]

@@gtr1963 Hey can you let me know what was Hemoglobin level and RBC level when it was diagnosed?

[@gtr1963]

​@@aarhav9193 My hematocrit was at 53 when i was diagnosed. The same day I had my bone marrow biopsy results come back positive for PRV

[@RyanJackson-t2t]

I found out at 35years old on a er visit by a young resident that I had pv for the last 20 years and no one caught it there were times where sarin and when I had my first heart attack I was being given Lovenox and they couldn’t get my blood levels right because I had 2 pints more blood than I was supposed to or when I was incarcerated. The prison doctor said hey man, so council up, are you feeling OK? Didn’t put two together then went to have a chemical stress test done on my heart, and this young doctor went back and looked at all my blood work over the years he said amen never told you you have this. I asked him as a cancer, and he said no because she couldn’t give that diagnosis in the ER but it is essentially that it’s a chronic leukemia, so I think I’m way past phlebotomy at this point I’m bruising really bad. The water reaction on my legs is getting worse, the white streaking anemia coming out of my nails quit drinking a year ago after I found out quit using hard drugs about 10 months ago that went on the self-destructing path but I’ve made my piece with this if it’s been there for 20 years

[@guruprasadkm7416]

Can a person with PV supplement with oral Glycine and NAC every day?

[@FlipMacz]

Thank you!

[@il3mendo]

Is also high homocysteine associated with polycytemia vera ?

[@justinaunogwu298]

Thank you so much Dr Dagba for curing me of polycythemia vera🙏🏼

[@Pr0ph3cy-k5z]

Dr booga booga cured me

[@Fireguy65]

@@Pr0ph3cy-k5zsame!

[@il3mendo]

Is there any diet raccomandation on polycytemia vera ? Any correlation with Celiac/Chron s/ hypothyroidism and mthfr polymorphism?

[@shikhasgupta]

My mom in law is 68 yr old and her hb is 15.9 but have many symptoms of pv..

[@alicemaarouf3911]

Please please , I desperately need help . How can you help me ? Serious enquiry

[@alprincmalki]

I have itching time to time but not after hot shower what does that mean also my hemogolobin is normal but RBC is high

[@goldlotus7831]

Patient with PV on treatment with Jakafi has thrombocytopenia and splenomegaly. The WBC count is high 22k .What could be the reason and how to treat?

[@Pr0ph3cy-k5z]

Wbc is high due to the immune system.

[@jerryphelps5117]

MY wife has PV and gets ulcers on her lower legs near her ankle shin bone area . Very difficult to heal due to the medication she is on. (hydroxyurea). she there somethings she can use better than her current medication?

[@trishtaylor7308]

I was JAK2 negative a few months then now I’m polycythemia Vera

[@chetanrs]

You serious?

[@donmulder8061]

maybe you have one of the other mutations? Exon 12 or CALR?

[@chrisoliver9442]

Im sorry to hear 🙏 i also have this too 🙏

[@subratbeura9798]

Will u help me