Ask the Expert: Polycythemia Vera 

Hi Dr! I have ET Hydrea failed me, I take Anagrelide 0.5mg 3 in am and 3 in pm. I’ve had it for 5 yrs now. My Dr never told me anything about my disease process. Not one thing! I did my own research and I found you. I listen to every lecture you do. I don’t even know if I have Jak 2 or CALR! I’m disappointed in my Dr. I am switching now. Bone marrow bx never done! Thanx so much for all your info. I wish you were my Dr! God Bless You, Sir!

Thank you for your honesty Ruben. ! You're very informative i enjoy your input because I also have polythycemia vera i was diagnosed a little over 2 years ago !

Thank you,I was dx after several months of double vision and Tia ,I'm on Hydrea,monthly CBC and levels show that I'm maintaining my Pvt.But I m always very tired ,and that's something my family doesn't understand,so it was so nice to open tutu be and find some medical advice,thanks so much.

Thank you so much for information on this disease.

Very good information

Im sure this comment will get burried-also, not to be lost on the age of this video, I feel as though Im grasping at the short straw. My question for you doctor is, have you seen any Lyme Disease patients who later go on to develop this? I've just discovered this as an actual diagnosis in my medical chart!? My mind is blown! Thank you so much in advance.

Are the mthfr and the tcr y associated ?

Does anyone have any idea how long i takes after phlebotomy until the headaches stop? I had a 58% Hct and an 18.8 Hgb prior to it.

Thanks for this video ! Recently I found I got PV . I'm just taking baby aspirin. Doing some Yoga specially inhaling lots oxygen at morning. Looks like I feel more energetic than before. Doctor want to me test blood every month after month my report almost normal. My question is that yoga really help that ? And if my blood report are normal than polycythemia Vera will go away or will stay whole life with me ?

Can you have double jak2 mutations and not get sick? What if you feel sick, have the mutations but your blood count is just under the cut off point for 'high' counts?

I recently lay had a total knee they found Out my white count was 22000 and I have chronic leukemia I need some advice for treatment going forward I am a 60 year male with a 3 year old I would love to live 40 years more my dad passed at 85!!- year ago from this

Does it help to cut out red meat and iron rich foods? My mother’s hemotocrit is 61...

Is it absolutely necessary to have a bone marrow biopsy to diagnose PV, is there an alternative?

I have been diagnosed with polycythemia vera and I have in both of my lower limbs my left leg is 28% flow through arteries and veins three arteries completely plugged and the highest 27.8% on vans and I'm still being treated with phlebotomies and aspirin I need to find an oncologist or a blood doctor at knows what they're doing please help

My wife was diagnosed with PV 16 years ago. what we didn't know at the time was the tenants that lived in our condo before us was using the place as a methamphetamine lab for yrs. could this have been the cause of my wife's ailment? we are still living there for 17yrs. also my thyroid is totally non functional

Thank you so much for the info: Im a 47 y.o. Female, diagnosed when I was 16. My father's and brother's went into remission. My mother has Lupus, and on top of the PV I have mixed connective tissues disease, and have Anti phospholipid antibody syndrome, i have averaged clots about one q. 2 yrs even though INR is kept at 3.5-4. What are the final stages of this disease, Im way beyoungd anything you described, and would like to know what to expect. Thank you, Thank you. YHWH bless you.

I now have a new hemoc Dr, He called me a platelet millionaire. Lol 😆! Anyway, my platelets were too low with 6 Anagrelide a day. He lowered me to 4 a day. I Get check again on December 10th. My platelets were 99,000! Hopefully, I’m in better hands now.

What does it mean to have high platelets?

I have 2 polycythaemia l have 2 venesection now and feel better lol

They told me I didnt have cancer. Is this a cancer or not I got P V but every thing I see read or do can't seem to find out or not. Or do I have a cancer. "Or not" Does some people get cancer with this disease.Or do we all have cancer with PV or not!!

What gets me is I'd be sent for blood letting (Phlebotomy) rather than fixing my thyroid! And so the thyroid would be ignored and I'd be sent into anemia etc. etc. Bad enough I had my throat cut for a PARA tumor and the other 3 para glands each biopsied, left with large clips in my neck and side effects from low calcium as one goes from hyper para to hypo para thyroidism instantly! PTH and D3 and Calcium and magnesium and potassium which tends to tank to the point in the ER needing 2-3 bags! Sorry, not going to accept a polycythemia diagnosis without demanding thyroid meds first!

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My father attacked an polycythemia Vera is there any solution to complete recovery and how long my father can alive now his age is 58.

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Does it help to cut out red meat and iron rich foods? My mother’s hemotocrit is 61...

Does it help to cut out red meat and iron rich foods? My mother’s hemotocrit is 61...