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.
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.
It will take about 6 months or so to figure out some sort of routine. Once they get your numbers where they like them, platelets, hemoglobin and hematocrit, you will feel much better and not go in so often. I’m at six months in from diagnosis. Had 6 phlebotomies, once weekly, then every month and now it was 9 weeks. Hoping to get it to every 3-4 months. I take Hydroxyurea 3X a week which is a low dose. They will be playing with that dosage indefinitely until some sort of normalcy with your numbers. My hemoglobin stands at about 14 now? Was 22 in January. Hematocrit must be at 45 or under to be safe. Mine was 62 at the start. Over that it’s time for a phlebotomy. Platelets, my doctor says under 600 is acceptable although the lab standards say up to 450? So for the first time I’m steady at 470 for six weeks. I was 777 in January and have been yoyoing, so stressful! I do feel better and am hopeful it’s finally leveling out. Hang in there!
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
It will take about 6 months or so to figure out some sort of routine. Once they get your numbers where they like them, platelets, hemoglobin and hematocrit, you will feel much better and not go in so often. I’m at six months in from diagnosis. Had 6 phlebotomies, once weekly, then every month and now it was 9 weeks. Hoping to get it to every 3-4 months. I take Hydroxyurea 3X a week which is a low dose. They will be playing with that dosage indefinitely until some sort of normalcy with your numbers. My hemoglobin stands at about 14 now? Was 22 in January. Hematocrit must be at 45 or under to be safe. Mine was 62 at the start. Over that it’s time for a phlebotomy. Platelets, my doctor says under 600 is acceptable although the lab standards say up to 450? So for the first time I’m steady at 470 for six weeks. I was 777 in January and have been yoyoing, so stressful! I do feel better and am hopeful it’s finally leveling out. Hang in there!
I have been recently diagnosed and had a heart attack,partly the reason being of high red blood cell count.Wanted to know if anyone with this blood abnormalities, how often they went for phelebotomy and what were their count of haemoglobin.
I will be 69 in July and was diagnosed with PV in April of 2021… Because my HCT was high, I was immediately put on hydroxyurea. I was already taking a baby aspirin and that was also recommended to continue taking.. I did not know what to expect and very concerned about taking a chemo pill.. When you hear the word chemotherapy, you think about potential side effects and how they could impact your life.. I was and still am very active despite having my dose of Hydroxyurea increased to 8500 mg per week.. So far, I have not experienced any known side effects from the HU and have been able to stay very active.. I don’t know how long it will last for me and I know some people have a very hard time tolerating HU.. It seems to be an individual thing… In my case, I have monthly blood tests and the results have been good now for over a year.. I’m not happy about taking these very potent pills, but so far they have been working for me… I hope this helps..
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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.
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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
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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1 ReactionIt 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
It will take about 6 months or so to figure out some sort of routine. Once they get your numbers where they like them, platelets, hemoglobin and hematocrit, you will feel much better and not go in so often. I’m at six months in from diagnosis. Had 6 phlebotomies, once weekly, then every month and now it was 9 weeks. Hoping to get it to every 3-4 months. I take Hydroxyurea 3X a week which is a low dose. They will be playing with that dosage indefinitely until some sort of normalcy with your numbers. My hemoglobin stands at about 14 now? Was 22 in January. Hematocrit must be at 45 or under to be safe. Mine was 62 at the start. Over that it’s time for a phlebotomy. Platelets, my doctor says under 600 is acceptable although the lab standards say up to 450? So for the first time I’m steady at 470 for six weeks. I was 777 in January and have been yoyoing, so stressful! I do feel better and am hopeful it’s finally leveling out. Hang in there!
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3 ReactionsI take jakafi to keep my blood under control I never have to take blood transfusion so far in 7 years
It sounds like you are working well with your doctor and healthy balance.