Hi as I’ve recently been diagnosed with PV and have the JAK2 mutation I’m reading all your posts with interest but some of the terminology I don’t understand I was only told that my platelets were high at 500 normal being between 150-400 and I was told because of this I was at risk of heart attack and stroke and have been put on aspirin and also hydroxyurea , big words like hematocrit and EPO don’t mean anything to me could someone explain as I’d like to be able to discuss these at my next visit to haematologist also waiting to get bone marrow biopsy to see the extent of damage
@roughanne Hematocrit is the measure of red blood cells as a component of your total blood levels. My doctor used to base his recommendations for a phlebotomy using it. But now he decides that based on my hemoglobin levels.
@roughanne Hello. I was diagnosed with JAK2/PV almost 6 years ago. I’m 78 soon.
Started on Hydroxyurea (HU) 500mg daily and began seeing hematologist but wasn’t happy with dr. So, I found a wonderful Dr. in Mayo system. She immediately increased HU to 1000 mg daily and began phlebotomies. I was going in for bloodwork every month but now it’s every three months unless I begin to feel unwell. I feel it when my hematocrit reaches 42 (my legs/calfs) and within a day of phlebotomy I feel better.
Because I’m old (it is what it is) and have other issues it’s hard for me to be able to completely differentiate between PV symptoms and my old self.
I can say that at the beginning of this I did experience exhaustion I had never felt. It’s usually better now and I’ve learned to rest more. But, luckily, no headaches or bone pain, or mouth sores and very little itching (and I love a hot shower).
When first diagnosed I scared myself when I googled PV because my GP who sent me for JAK2 Test did not tell me it was cancer and only told me to get to a hematologist.
Please ask your questions because there are a lot of very nice people here, of all ages, and with varying experiences and all helpful
And, if you haven’t already, find a good hematologist who you trust and believe in.
@christina3444 thank you so much for all that info it’s been a lot for me to take in I’ve been prescribed 500mg of hydroxyurea and have just started it so don’t know as yet how it will help also waiting to get bone marrow biopsy so I’ll keep in touch and let you know my progress also like you I may get a second opinion if I’m not happy as I was quite shocked to get the diagnosis and am still trying to process it , I’m 77 a similar age to you but don’t classify myself as old still want to do lots more things in my life and just want to be able to manage whatever life throws at me , I’m Irish and living in Ireland where are you based?
@roughanne Hematocrit is the measure of red blood cells as a component of your total blood levels. My doctor used to base his recommendations for a phlebotomy using it. But now he decides that based on my hemoglobin levels.
Hi as I’ve recently been diagnosed with PV and have the JAK2 mutation I’m reading all your posts with interest but some of the terminology I don’t understand I was only told that my platelets were high at 500 normal being between 150-400 and I was told because of this I was at risk of heart attack and stroke and have been put on aspirin and also hydroxyurea , big words like hematocrit and EPO don’t mean anything to me could someone explain as I’d like to be able to discuss these at my next visit to haematologist also waiting to get bone marrow biopsy to see the extent of damage
@roughanne
Hello. I’m a 59 year old female about three years in with PV and JAK2 positive. My platelets exceeded 800 in the begining.and now I stick around 300-400 taking Hydroxyurea and baby aspirin daily. I would urge you to do your research. PV can be diagnosed soley from your blood tests and a bone marrow test is not always needed. If you feel YOU need it to confirm this diagnosis because it is a big one that’s different but I chose not to do it and my doctor said that was fine. The main question to ask is “Will my treatment plan change from my bone marrow results?” There are only two medications for us to lower platelets and red cells and we all take at least a baby aspirin. Over 60 or if you have other health issues you take a full dose aspirin. Phlebotomist when hematocrit is over 45. Just remember. Clinics and Hospitals are businesses sadly and can push us to do such tests. I dont know if you have other conditions and it is what ever you feel comfortable with but I thought you should know this and do your research first. Good luck!
@christina3444 thank you so much for all that info it’s been a lot for me to take in I’ve been prescribed 500mg of hydroxyurea and have just started it so don’t know as yet how it will help also waiting to get bone marrow biopsy so I’ll keep in touch and let you know my progress also like you I may get a second opinion if I’m not happy as I was quite shocked to get the diagnosis and am still trying to process it , I’m 77 a similar age to you but don’t classify myself as old still want to do lots more things in my life and just want to be able to manage whatever life throws at me , I’m Irish and living in Ireland where are you based?
@roughanne Hello. I’m in Arizona. I visited Ireland about 20 years ago. What a beautiful place!
Trust me, I’m still a force to be reckoned with at my age! But, if we divide the world into young and old, Im definitely going to stand on the old side. And, thank God for it because I wouldn’t want to be young again. I would want to be able to do the things I could do, physically.
Anyway, you got another response that mentions bone marrow test. Im agree with that poster. My hematologist is great and one reason I like her is that she, unlike the first one, doesn’t seem to be offended by my questions. At our first visit I asked her the prognosis and progression I could expect and she was honest and told me if the HU and phlebotomies didn’t bring hematocrit, etc. down then a bone marrow test. So far, the treatment has worked so no bone marrow necessary. And, I also take one baby aspirin daily.
I would question the need for the bone marrow being done before you know if the HU and phlebotomies will work. But, do what you feel is best for you.
Honestly, it took me about a year to get my head around it all and to stop thinking I was about to die. I had never really been ill in my life and I guess it never occurred to me I would get sick this late in life! I will also be honest and say that when I read some of the other posts on Connect, this diagnosis is far from the worst!
When I think too much about it and begin to wallow I give myself 10 minutes to cry and feel sorry for myself. Then I move on.
Maybe something I’ve said will be helpful to you. I hope so. Please keep posting so we know how you are and how we can help. Christina
@roughanne Hello. I’m in Arizona. I visited Ireland about 20 years ago. What a beautiful place!
Trust me, I’m still a force to be reckoned with at my age! But, if we divide the world into young and old, Im definitely going to stand on the old side. And, thank God for it because I wouldn’t want to be young again. I would want to be able to do the things I could do, physically.
Anyway, you got another response that mentions bone marrow test. Im agree with that poster. My hematologist is great and one reason I like her is that she, unlike the first one, doesn’t seem to be offended by my questions. At our first visit I asked her the prognosis and progression I could expect and she was honest and told me if the HU and phlebotomies didn’t bring hematocrit, etc. down then a bone marrow test. So far, the treatment has worked so no bone marrow necessary. And, I also take one baby aspirin daily.
I would question the need for the bone marrow being done before you know if the HU and phlebotomies will work. But, do what you feel is best for you.
Honestly, it took me about a year to get my head around it all and to stop thinking I was about to die. I had never really been ill in my life and I guess it never occurred to me I would get sick this late in life! I will also be honest and say that when I read some of the other posts on Connect, this diagnosis is far from the worst!
When I think too much about it and begin to wallow I give myself 10 minutes to cry and feel sorry for myself. Then I move on.
Maybe something I’ve said will be helpful to you. I hope so. Please keep posting so we know how you are and how we can help. Christina
@christina3444 Hello I’m in TX another hot state! Heat is hard on us PV people. I was happy to read your reply stating to hold off on the bone marrow test, of course if she’s comfortable with that. Luckily I’m keeping mine under control with the hydroxyurea and phlebotomies. The key is to get your labs regularly and know your symptoms. I get that lingering headache when my numbers get high. Stay positive!
Hello,
I'm 77 years old live in Seabrook, Texas I have PV JAK2 positive diagnosed 3 years ago but sure I had it sooner. I'm a patient at MD ANDERSON, Houston..I'm on hydroxurea and baby asa, the standard treatment. I did have a bone marrow but honestly don't recalled being asked but possibly was. ..I just went along with the treatment. If you are asked to have or want a BM I was nervous but it was not painful as I expected and have not been asked to do a repeat. We have a rare disease which makes this site more valuable. I have a medical background, did a deep dive (using AI) to learn everything I could about PV JAK2, what to do and what not to do always checking with my care team before making any changes. I'm used to my dose of hydrea it doesn't bother me at all anymore. I did snuggle in the beginning..I find few if any physicians in the community outside of my care team have not ever had a patient with PV JAK2 and don't understand it. BTW there is a difference in having just PV or PV JK2 positive im sure everyone is aware just thought I'd mention it.. If anyone would like to communicate or meet for coffee I would love it...Jacqueline Carey...
Hello,
I'm 77 years old live in Seabrook, Texas I have PV JAK2 positive diagnosed 3 years ago but sure I had it sooner. I'm a patient at MD ANDERSON, Houston..I'm on hydroxurea and baby asa, the standard treatment. I did have a bone marrow but honestly don't recalled being asked but possibly was. ..I just went along with the treatment. If you are asked to have or want a BM I was nervous but it was not painful as I expected and have not been asked to do a repeat. We have a rare disease which makes this site more valuable. I have a medical background, did a deep dive (using AI) to learn everything I could about PV JAK2, what to do and what not to do always checking with my care team before making any changes. I'm used to my dose of hydrea it doesn't bother me at all anymore. I did snuggle in the beginning..I find few if any physicians in the community outside of my care team have not ever had a patient with PV JAK2 and don't understand it. BTW there is a difference in having just PV or PV JK2 positive im sure everyone is aware just thought I'd mention it.. If anyone would like to communicate or meet for coffee I would love it...Jacqueline Carey...
@jackiecarey hi Jackie I also am 77 and like you have never heard of PV or met anyone with this condition so all the info I’m getting on this site is super helpful, I think I had this for at least 3yrs because since been diagnosed a lot of the symptoms I’d had bone pain ,night sweats ,and itching and have spent a fortune going to see lots of different specialists and it was my local doctor who queried something on my blood tests that ended up giving me my diagnosis, I’m waiting to get the bone marrow biopsy and hopefully it won’t show much scarring I’ve starting 500mg hydrea and aspirin so hopefully I’ll tolerate it well and the next blood tests will be ok , I wish I lived near all you wonderful people so that I could meet up for a coffee and have a chat , I live in Ireland so that’s not possible but we can form our own little online club 😊
@christina3444 Hello I’m in TX another hot state! Heat is hard on us PV people. I was happy to read your reply stating to hold off on the bone marrow test, of course if she’s comfortable with that. Luckily I’m keeping mine under control with the hydroxyurea and phlebotomies. The key is to get your labs regularly and know your symptoms. I get that lingering headache when my numbers get high. Stay positive!
@nypara66 thanks so much for all the info it seems all the replies I’m getting are from the US so I’m wondering if anyone in Ireland has been diagnosed with PV ?as I’d love to hear from you !!! but the one thing I’ve noticed is that we all seem to be getting the same treatment which is reassuring as I would have thought you might have newer drugs in the US thanks again for all the info it’s reassuring to know I’m not alone in dealing with this
@nypara66 thanks so much for all the info it seems all the replies I’m getting are from the US so I’m wondering if anyone in Ireland has been diagnosed with PV ?as I’d love to hear from you !!! but the one thing I’ve noticed is that we all seem to be getting the same treatment which is reassuring as I would have thought you might have newer drugs in the US thanks again for all the info it’s reassuring to know I’m not alone in dealing with this
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@roughanne Hematocrit is the measure of red blood cells as a component of your total blood levels. My doctor used to base his recommendations for a phlebotomy using it. But now he decides that based on my hemoglobin levels.
@christina3444 thank you so much for all that info it’s been a lot for me to take in I’ve been prescribed 500mg of hydroxyurea and have just started it so don’t know as yet how it will help also waiting to get bone marrow biopsy so I’ll keep in touch and let you know my progress also like you I may get a second opinion if I’m not happy as I was quite shocked to get the diagnosis and am still trying to process it , I’m 77 a similar age to you but don’t classify myself as old still want to do lots more things in my life and just want to be able to manage whatever life throws at me , I’m Irish and living in Ireland where are you based?
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1 Reaction@beebo thanks for that info still trying to get my head around all this
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1 Reaction@roughanne
Hello. I’m a 59 year old female about three years in with PV and JAK2 positive. My platelets exceeded 800 in the begining.and now I stick around 300-400 taking Hydroxyurea and baby aspirin daily. I would urge you to do your research. PV can be diagnosed soley from your blood tests and a bone marrow test is not always needed. If you feel YOU need it to confirm this diagnosis because it is a big one that’s different but I chose not to do it and my doctor said that was fine. The main question to ask is “Will my treatment plan change from my bone marrow results?” There are only two medications for us to lower platelets and red cells and we all take at least a baby aspirin. Over 60 or if you have other health issues you take a full dose aspirin. Phlebotomist when hematocrit is over 45. Just remember. Clinics and Hospitals are businesses sadly and can push us to do such tests. I dont know if you have other conditions and it is what ever you feel comfortable with but I thought you should know this and do your research first. Good luck!
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Helpful -
Hug
1 Reaction@roughanne Hello. I’m in Arizona. I visited Ireland about 20 years ago. What a beautiful place!
Trust me, I’m still a force to be reckoned with at my age! But, if we divide the world into young and old, Im definitely going to stand on the old side. And, thank God for it because I wouldn’t want to be young again. I would want to be able to do the things I could do, physically.
Anyway, you got another response that mentions bone marrow test. Im agree with that poster. My hematologist is great and one reason I like her is that she, unlike the first one, doesn’t seem to be offended by my questions. At our first visit I asked her the prognosis and progression I could expect and she was honest and told me if the HU and phlebotomies didn’t bring hematocrit, etc. down then a bone marrow test. So far, the treatment has worked so no bone marrow necessary. And, I also take one baby aspirin daily.
I would question the need for the bone marrow being done before you know if the HU and phlebotomies will work. But, do what you feel is best for you.
Honestly, it took me about a year to get my head around it all and to stop thinking I was about to die. I had never really been ill in my life and I guess it never occurred to me I would get sick this late in life! I will also be honest and say that when I read some of the other posts on Connect, this diagnosis is far from the worst!
When I think too much about it and begin to wallow I give myself 10 minutes to cry and feel sorry for myself. Then I move on.
Maybe something I’ve said will be helpful to you. I hope so. Please keep posting so we know how you are and how we can help. Christina
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Helpful -
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2 Reactions@christina3444 Hello I’m in TX another hot state! Heat is hard on us PV people. I was happy to read your reply stating to hold off on the bone marrow test, of course if she’s comfortable with that. Luckily I’m keeping mine under control with the hydroxyurea and phlebotomies. The key is to get your labs regularly and know your symptoms. I get that lingering headache when my numbers get high. Stay positive!
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Helpful -
Hug
3 ReactionsHello,
I'm 77 years old live in Seabrook, Texas I have PV JAK2 positive diagnosed 3 years ago but sure I had it sooner. I'm a patient at MD ANDERSON, Houston..I'm on hydroxurea and baby asa, the standard treatment. I did have a bone marrow but honestly don't recalled being asked but possibly was. ..I just went along with the treatment. If you are asked to have or want a BM I was nervous but it was not painful as I expected and have not been asked to do a repeat. We have a rare disease which makes this site more valuable. I have a medical background, did a deep dive (using AI) to learn everything I could about PV JAK2, what to do and what not to do always checking with my care team before making any changes. I'm used to my dose of hydrea it doesn't bother me at all anymore. I did snuggle in the beginning..I find few if any physicians in the community outside of my care team have not ever had a patient with PV JAK2 and don't understand it. BTW there is a difference in having just PV or PV JK2 positive im sure everyone is aware just thought I'd mention it.. If anyone would like to communicate or meet for coffee I would love it...Jacqueline Carey...
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Helpful -
Hug
5 Reactions@jackiecarey hi Jackie I also am 77 and like you have never heard of PV or met anyone with this condition so all the info I’m getting on this site is super helpful, I think I had this for at least 3yrs because since been diagnosed a lot of the symptoms I’d had bone pain ,night sweats ,and itching and have spent a fortune going to see lots of different specialists and it was my local doctor who queried something on my blood tests that ended up giving me my diagnosis, I’m waiting to get the bone marrow biopsy and hopefully it won’t show much scarring I’ve starting 500mg hydrea and aspirin so hopefully I’ll tolerate it well and the next blood tests will be ok , I wish I lived near all you wonderful people so that I could meet up for a coffee and have a chat , I live in Ireland so that’s not possible but we can form our own little online club 😊
@nypara66 thanks so much for all the info it seems all the replies I’m getting are from the US so I’m wondering if anyone in Ireland has been diagnosed with PV ?as I’d love to hear from you !!! but the one thing I’ve noticed is that we all seem to be getting the same treatment which is reassuring as I would have thought you might have newer drugs in the US thanks again for all the info it’s reassuring to know I’m not alone in dealing with this
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3 Reactions@roughanne Even though it’s such a rare disease, this site has brought us together and I am grateful not to feel so alone also!
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