My mom has Polycythemia Vera: Can PV be managed without phlebotomies?

MDAnderson did perform a bone marrow test. Not sure it added much to the diagnosis as treatment didn't change..Ive had it 2 years, I'm 77 and I take my hydrox with asa 80 mg in the morning and move on with my day..As time moves on I'm thinking of PV less and less..Try not to dwell on it like I did, it doesn't help...Move on and enjoy your life. in the beginning you may believe it's not possible, but it is....

As I walk through MDA I realize just how lucky i'am...

Is it possible to live with Polycythemia Vera (PV) without phlebotomies? Everyone's situation is different. All I know is I have had PV for 6 years now and never had a phlebotomy. I take Hydroxyurea 500 mg once a day. I was diagnosed with PV in 2018 after a routine blood test showed my body was creating platelets like a Nascar race engine. Now my platelets are under control. So, is it possible for life with no phlebotomies? For me it is. I stay active, go to my gymnasium 3 times a week and am involved in many activities. All before 4pm when the fatigue monster gets to me. I wish you the best. From a 66 year old farmer. Watching the bluegrass grow in God's country known as Kentucky. Stay busy, stay active. If we do not use it we will lose it.

Hi sorry you havePV.I have had it for a few years and was taking hydroxyurea and increasing the dose every months and then no longer needed blood drops.Then things balanced out for a year and then they put me on Jakifi and it is working well.
For how long is anybody guess .But the good news is we are here and still going.Keep up the work and listened to the Doc.Bless you and your family as they help you.

Hello I have PV Just over two years. I’m doing well so far on Hydroxyurea with a phlebotomy every few months. My question is, Did you get put on Besremi first before Jakafi? I was having issues and my oncologist said Jakafi is the third, last choice? Maybe it depends if you have other health conditions? I was freaking out because Besremi is super expensive, many side effects and also just came out in 2019. I didn’t research Jakafi. Glad it’s working for you!

I’m 76 and was diagnosed with PV/ Jak 2. 3 yrs ago .I have been on Jakafi for 3 months and so far it has worked wonders, especially for my itching symptoms. It’s not cheap $18000.00 a month but insurance overs it. At night I feel the fatigue.

Hi again I am74 aswell and jakifi is about 18 k a month crazy expensive and believe it is the last drug for me.Jakifi has side effects aswell,they all have some draw backs,but working for me and I take 2 pills a day at 10 mil each.my hematocrit is steady at .41.I went straight from hydroxyurea to jakifi.

Phlebotomies did not bother me, but they had trouble getting a full pint, no matter how much water I drank. Eventually, they were pumping water in one arm, and taking blood out the other, and I'd still clot off.

I started with phlebotomies every week for 6 weeks and 500mg HU daily.

Went to 1000mg HU daily, and phlebotomies monthly.

Then 1500mg HU daily, and phlebotomies monthly. But the side effects for ME, were getting severe. Others have not had the responses I had. After quitting HU, my ailments diminished markedly within 24 hours.

Now I'm on 15mg Jakafi 2x a day now, and no phlebotomies, no noticeable side effects. Insurance and Incyte copay program are covering the $18,000 a month cost. At least that's the cost on paper.

Good luck to you and your mother.

I was on 10 mg 2X day but it was working too well. Now I’m on 5 mg 2X day and all is well. I do have more fatigue but just kick myself up and exercise a bit. It helps

Hey I don’t think so my mom had it for over 40 years and she faithfully took her medication and did phlebotomy at least three times a month. Did took over her whole body three years ago and she died from it. I don’t know if there’s any cure for it at all our hematologist/oncologist was the best and she couldn’t find anything that could help her. My mom hemoglobin use to be 16-17 her last 6 months it went to 3-4 that’s what I have severe anemia.

I am 65 and 14 years post left side stroke. Great rehab and I was back on my feet in a week (with assistance). My PCP began following my RBC numbers and referred me to a Hematologist about a year ago. She did the CT and bone marrow and determined that I should do phlebotomies every 4-8 weeks based on numbers. So far, so good in the management without medication. But I have low iron and potassium even with supplements. BTW, I have found Effer K (like alka seltzer in water) and Integra (iron supplement with vitamins) to be convenient, but not yet getting me to the proper amounts. My doc said I may require iron infusions and I was curious about others' experiences with this background. I was already taking Plavix because of the stroke. Thanks