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..
Hi! I just saw you mentioned a transplant? Which one? My husband had a liver transplant 7 years ago and is doing pretty well. He’s on different drugs which are immunosuppressive also, as I’m sure you are aware of. Hydroxyurea for PV high risk for skin cancer as are transplant meds.
Hi, @nypara66, I had a bone marrow transplant 4 years ago tomorrow! Initially I was probably taking the same immunosuppressant drugs as your husband. With organ transplants I know patients will be on those meds for life. With a BMT, eventually we can usually stop taking the meds at some point because our new immune system begins to recognize the proteins in our body and no longer rejects us! That’s the goal, but doesn’t always work out that way. There can be some lingering issues with graft vs host disease. However, even with a new immune system it will never be as robust as the factory installed version.😅 So sunscreen is a must!
Solid organ transplants do require lifelong immunosuppressants which act as an anti-rejection medication because the immune system will always see the organ as an invading entity. So yes, your husband will need that sunscreen and protective clothing. If he’s like me, we’re just grateful to be living and if wearing a mask and sunscreen keeps us healthy, that’s an easy trade. Every day is a gift!
Do you live in a high sun area? Right now, in northern Wisconsin, the smoke from those devastating fires in Canada is blotting out the sun and it’s really difficult to breathe when outside. The N-95 mask has really helped on my daily walks.
You’re welcome! I’d never given it much thought either before my transplant. I had used sunscreen, albeit sporadically in my pre-transplant days but having the conversation with my doctor, he said only sunscreen isn’t protection enough and that uv damage is accumulative.
I seldom paid much attention to the UV reports but I do now. Because even cloudy days, there can still be sun damage from the UV rays.
I tend to lose my cherub-like demeanor when it’s hot (especially with humidity). How are you staying cool in that oppressive heat in the southwest?
Hi! I just saw you mentioned a transplant? Which one? My husband had a liver transplant 7 years ago and is doing pretty well. He’s on different drugs which are immunosuppressive also, as I’m sure you are aware of. Hydroxyurea for PV high risk for skin cancer as are transplant meds.
Im in Houston and it’s HELL! Pretty much staying inside except the occasional run to the store. Sunscreen and protective clothing are the new norm for us PV People. At least we can continue on without too much suffering!
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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.
Hi, @nypara66, I had a bone marrow transplant 4 years ago tomorrow! Initially I was probably taking the same immunosuppressant drugs as your husband. With organ transplants I know patients will be on those meds for life. With a BMT, eventually we can usually stop taking the meds at some point because our new immune system begins to recognize the proteins in our body and no longer rejects us! That’s the goal, but doesn’t always work out that way. There can be some lingering issues with graft vs host disease. However, even with a new immune system it will never be as robust as the factory installed version.😅 So sunscreen is a must!
Solid organ transplants do require lifelong immunosuppressants which act as an anti-rejection medication because the immune system will always see the organ as an invading entity. So yes, your husband will need that sunscreen and protective clothing. If he’s like me, we’re just grateful to be living and if wearing a mask and sunscreen keeps us healthy, that’s an easy trade. Every day is a gift!
Do you live in a high sun area? Right now, in northern Wisconsin, the smoke from those devastating fires in Canada is blotting out the sun and it’s really difficult to breathe when outside. The N-95 mask has really helped on my daily walks.
Hi! I just saw you mentioned a transplant? Which one? My husband had a liver transplant 7 years ago and is doing pretty well. He’s on different drugs which are immunosuppressive also, as I’m sure you are aware of. Hydroxyurea for PV high risk for skin cancer as are transplant meds.
I'm just 60 miles up the road towards Austin and it is blistering hot here. I only go out after dark unless I can't avoid it.
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