I was officially diagnosed with PV in Dec22 after developing high BP when I attempted to give blood( irony not lost). Routine bloodwork at my GP revealed'thick blood,' which led to PV diagnosis by hema/onc and have been getting regular phleb. I have the JAK2 and wonder how that mutation even happens.I just saw a second hema/onc today, seeking more information. I am curious as to what medications, diets have been helpful. I had NO idea anything was wrong and want to do my part in staying healthy. Thanks!
I was officially diagnosed with PV in Dec22 after developing high BP when I attempted to give blood( irony not lost). Routine bloodwork at my GP revealed'thick blood,' which led to PV diagnosis by hema/onc and have been getting regular phleb. I have the JAK2 and wonder how that mutation even happens.I just saw a second hema/onc today, seeking more information. I am curious as to what medications, diets have been helpful. I had NO idea anything was wrong and want to do my part in staying healthy. Thanks!
You might also wish to use the search function to find addition discussions about JAK2 and polycythemia vera, including tips on healthy lifestyle, diet, managing side effects, and treatment options.
I was officially diagnosed with PV in Dec22 after developing high BP when I attempted to give blood( irony not lost). Routine bloodwork at my GP revealed'thick blood,' which led to PV diagnosis by hema/onc and have been getting regular phleb. I have the JAK2 and wonder how that mutation even happens.I just saw a second hema/onc today, seeking more information. I am curious as to what medications, diets have been helpful. I had NO idea anything was wrong and want to do my part in staying healthy. Thanks!
Is that medication expensive? Hydroxyurea is working for me so far and is only $8 for 30 pills. I was so grateful it was affordable being I’ll have to meet my deductible every year and more, for labs/phlebotomies/doc appointments. That is a newer medication and Hydroxyurea has been around a very long time.
I also am taking Jakafi. It helps immensely with PV side effects however I still need a phlebotomy every couple months. My hematocrit is kept at 42 or below.
Is that medication expensive? Hydroxyurea is working for me so far and is only $8 for 30 pills. I was so grateful it was affordable being I’ll have to meet my deductible every year and more, for labs/phlebotomies/doc appointments. That is a newer medication and Hydroxyurea has been around a very long time.
It was tough at first I experienced the same thing when I first started my blood count was at 67 I felt sick as a dog my blood was very thick but we made it we're down to 40 on my blood count thank the Lord I was put on Jackifi because the other was not slowing my blood down and also I am on eliquis as a blood thinner 10 mg twice a day
I also am taking Jakafi. It helps immensely with PV side effects however I still need a phlebotomy every couple months. My hematocrit is kept at 42 or below.
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5 ReactionsWelcome to this "new planet" @cmcj. To help you connect with others, I moved your post to this existing discussion:
- Polycythemia Vera: Just been diagnosed. https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
I did this so you can read previous posts and connect with fellow members who have had PV for several years or just starting their journey like @nypara66 @draney @pamdg @chella65 @jerrlin @beebo @csgreetings @wendy517 and many others.
You might also wish to use the search function to find addition discussions about JAK2 and polycythemia vera, including tips on healthy lifestyle, diet, managing side effects, and treatment options.
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7 ReactionsI was officially diagnosed with PV in Dec22 after developing high BP when I attempted to give blood( irony not lost). Routine bloodwork at my GP revealed'thick blood,' which led to PV diagnosis by hema/onc and have been getting regular phleb. I have the JAK2 and wonder how that mutation even happens.I just saw a second hema/onc today, seeking more information. I am curious as to what medications, diets have been helpful. I had NO idea anything was wrong and want to do my part in staying healthy. Thanks!
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4 ReactionsI take Jakafi 10mg twice a day.
Yes extremely expensive.
I was allergic to HU so my insurance is covering the cost.
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1 ReactionIs that medication expensive? Hydroxyurea is working for me so far and is only $8 for 30 pills. I was so grateful it was affordable being I’ll have to meet my deductible every year and more, for labs/phlebotomies/doc appointments. That is a newer medication and Hydroxyurea has been around a very long time.
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Helpful -
Hug
1 ReactionWow 10 mg 2X a day of Elequis is a lot. My husband takes 2.5 2X a day for A fib. Be careful not to cut yourself. Happy your numbers have gone down!
Gotcha okay I'm glad it is working for you
5 mg I started at 10 mg but had to cut back.
How many milligrams do you take a day? I'm on 10 mg twice a day