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.
Heeey! This is the first time I’ve read someone compare the PV symptoms with those of menopause. I am in EXACTLY the same situation. Tingling, headaches, brain fog, flush face, all PV symptoms and all menopause as well. I guess in the end it doesn’t matter which is causing what, as long as we keep our blood counts in check. It really feels like we are being hit with a double play but we move forward. I was diagnosed in January. I’m 56 and began “The change” just over a year ago. I had 6 weekly phlebotomies and then monthly and now I’ve gone 8 weeks. On and off Hydroxyurea. When stopped platelets shot back up so I’m on them for life I’m told. Played with dosage and for 10 weeks I’ve been steady so hoping we got it right. Just 3 X a week which isn’t bad. Also it’s super cheap compared to the other medication that is offered if this one doesn’t work. I wish you luck and look forward to seeing you get this crap under control 😊
You're absolutely right about menopause symptoms and I've got bad allergies and that gives me headaches and major fatigue. It can be very hard to know what's what with the fatigue that's for sure. I'm 60 and done with the changes and the PV has blessed me with bad hot flashes more than the menopause, I've always run hot, have never liked hot weather....love to ski, fall hikes, football etc. This forum has been a lifesaver for me to hear stories, feedback and encouraging & helping others always makes us feel good.
I always say, it could be SO much worse, I'm not in a wheelchair, I'm not getting my breasts cut off, I really feel for many who go through those challenges with such courage & grace.
Life is a gift, I plan to have fun and enjoy many hobbies that bring me joy for a VERY long time!!
My research doesn't give a definitive answer to the secondary. I haven't tested pos for the gene, and I don't have any abnormality enlargements Im told just the elevated blood results and physical symptoms so may have to have the bone biopsy to be certain. I did some research on secondary and all I can find is there may be an underlying condition not yet obvious which doesn't say alot to me. Somethings I guess we just can't be certain about. Hang in there, we are all here for each other.
I was told before I had the Jak2 positive that if it were Polycythemia secondary that they recommend a body scan. They said they could begin with an complete abdominal ultrasound but ultimately the scan was needed. Something is causing your numbers to be what they are and you need to figure out what it is now rather than later. It’s hard not to stress but you need answers in order to fix what ever is wrong. Be persistent. You will figure it out and you will be better!
So my DX has been identified as secondary Polycythemia. I was so damn excited it was not polycythemia vera - but also a bit perplexed about what secondary polycythemia means, prognosis, etc. Hemo took more blood for another test. My HBG and HCT are high with HCT around 50. No real discussion about treatment - just "continue blood checks". Anyone here dealing with the same and provide some insight? It's been a rollercoaster of the "C" word to "nothing". the emotional ups and downs have moved into a major depressive episode. Of, which was in denial - not my first go around with that - and I'm doing my tried and true treatment to get out of that place. But, the questions around the polycythemia loom -
My research doesn't give a definitive answer to the secondary. I haven't tested pos for the gene, and I don't have any abnormality enlargements Im told just the elevated blood results and physical symptoms so may have to have the bone biopsy to be certain. I did some research on secondary and all I can find is there may be an underlying condition not yet obvious which doesn't say alot to me. Somethings I guess we just can't be certain about. Hang in there, we are all here for each other.
So my DX has been identified as secondary Polycythemia. I was so damn excited it was not polycythemia vera - but also a bit perplexed about what secondary polycythemia means, prognosis, etc. Hemo took more blood for another test. My HBG and HCT are high with HCT around 50. No real discussion about treatment - just "continue blood checks". Anyone here dealing with the same and provide some insight? It's been a rollercoaster of the "C" word to "nothing". the emotional ups and downs have moved into a major depressive episode. Of, which was in denial - not my first go around with that - and I'm doing my tried and true treatment to get out of that place. But, the questions around the polycythemia loom -
Thank you…just taking it day to day. I’ve had three phlebotomies so far. My levels were 18.5 and 58 before 3rd draw. They started at 21.3 and 68. My ferritin levels were only at 8 before I started. The fatigue and joints aching, have been my biggest side effects. My vision definitely has been affected, but that could just be age. Honestly, since last summer I was thinking all these symptoms were from starting menopause because my periods started to be a bit irregular. Lots of similar symptoms.
Heeey! This is the first time I’ve read someone compare the PV symptoms with those of menopause. I am in EXACTLY the same situation. Tingling, headaches, brain fog, flush face, all PV symptoms and all menopause as well. I guess in the end it doesn’t matter which is causing what, as long as we keep our blood counts in check. It really feels like we are being hit with a double play but we move forward. I was diagnosed in January. I’m 56 and began “The change” just over a year ago. I had 6 weekly phlebotomies and then monthly and now I’ve gone 8 weeks. On and off Hydroxyurea. When stopped platelets shot back up so I’m on them for life I’m told. Played with dosage and for 10 weeks I’ve been steady so hoping we got it right. Just 3 X a week which isn’t bad. Also it’s super cheap compared to the other medication that is offered if this one doesn’t work. I wish you luck and look forward to seeing you get this crap under control 😊
I really enjoy the conversations and support here. I love meeting new people and hearing their own personal stories. Thank you for yours!! I love my family so much and want to make sure I’m doing all I can to make sure I stay as healthy as I can for as long as I can!!❤️
Thank you…just taking it day to day. I’ve had three phlebotomies so far. My levels were 18.5 and 58 before 3rd draw. They started at 21.3 and 68. My ferritin levels were only at 8 before I started. The fatigue and joints aching, have been my biggest side effects. My vision definitely has been affected, but that could just be age. Honestly, since last summer I was thinking all these symptoms were from starting menopause because my periods started to be a bit irregular. Lots of similar symptoms.
I was just diagnosed in April and have had 5 phlebotomies. The crashing headaches stopped after 4 draws. The fatigue and achy joints is still with me and numbers are good, CBC yesterday I was at 12.8. I don't take meds other than a low dose aspirin daily right now. I do take Adderall for my ADHD which I need & it helps.
My oncologist told me at my first visit that I'd not likely need a bone marrow biopsy for a couple/few years. I did ask him about gummies the first visit, at least I believe so, I'll double check that next week when I see him. I like them to help me get better sleep at times, my brain doesn't like to shut off 😉
Hard to rest as a single Mom, I raised my 3 but they're all grown. My grands are 16&14. If at all possible ask for some help from family & friends. I'm blessed with many who help when I need it. My problem was asking.
My girlfriend knows I'm a visual person, she put together a color coded systems with magnets I put on fridge and if I have a purple day (very busy), I have 2-3 blue days following which are essentially resting. I don't like it but the hope is the days of rest needed get fewer and fewer. My idea of not doing much apparently to others is doing a lot 🙃
Good luck, ask away, this is a great group. It takes a village 💪 🙏 ❤️
Great advice from @Lori. OV doesn’t have to define you. Someone else’s advice was that with meds it is very manageable and altho it sounds more defeatist but is not meant as such, you are likely to die with it not from it. Energy levels may some days be impacted, but you can adjust your activities. Sounds like you’re doing well changing your lifestyle - keep on going!
Will the biopsy give a definite answer to pv? My current research says (may) which I think isn't definitive.
I have just added elevated glucose to my labs. I've asked for an earlier appt to discuss philbotomy in hopes of feeling better. I'm just getting confused because I don't have a positive JAK, my spleen and other organs are not inflamed but I do have elevated labs, severe exhaustion, itchy, recent eye issues etc. My checks can get red and look like rosea at times and the heat is just intolerable. I wonder if the bone biopsy would give a definite answer. If not then I suppose it's going to be an educated guess.
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Jakafi is $1600 a month I have subsistence otherwise my medicare would not cover it
You're absolutely right about menopause symptoms and I've got bad allergies and that gives me headaches and major fatigue. It can be very hard to know what's what with the fatigue that's for sure. I'm 60 and done with the changes and the PV has blessed me with bad hot flashes more than the menopause, I've always run hot, have never liked hot weather....love to ski, fall hikes, football etc. This forum has been a lifesaver for me to hear stories, feedback and encouraging & helping others always makes us feel good.
I always say, it could be SO much worse, I'm not in a wheelchair, I'm not getting my breasts cut off, I really feel for many who go through those challenges with such courage & grace.
Life is a gift, I plan to have fun and enjoy many hobbies that bring me joy for a VERY long time!!
Stay strong 💪 ✨️ 💓
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2 ReactionsI was told before I had the Jak2 positive that if it were Polycythemia secondary that they recommend a body scan. They said they could begin with an complete abdominal ultrasound but ultimately the scan was needed. Something is causing your numbers to be what they are and you need to figure out what it is now rather than later. It’s hard not to stress but you need answers in order to fix what ever is wrong. Be persistent. You will figure it out and you will be better!
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Like -
Helpful -
Hug
2 ReactionsMy research doesn't give a definitive answer to the secondary. I haven't tested pos for the gene, and I don't have any abnormality enlargements Im told just the elevated blood results and physical symptoms so may have to have the bone biopsy to be certain. I did some research on secondary and all I can find is there may be an underlying condition not yet obvious which doesn't say alot to me. Somethings I guess we just can't be certain about. Hang in there, we are all here for each other.
-
Like -
Helpful -
Hug
3 ReactionsSo my DX has been identified as secondary Polycythemia. I was so damn excited it was not polycythemia vera - but also a bit perplexed about what secondary polycythemia means, prognosis, etc. Hemo took more blood for another test. My HBG and HCT are high with HCT around 50. No real discussion about treatment - just "continue blood checks". Anyone here dealing with the same and provide some insight? It's been a rollercoaster of the "C" word to "nothing". the emotional ups and downs have moved into a major depressive episode. Of, which was in denial - not my first go around with that - and I'm doing my tried and true treatment to get out of that place. But, the questions around the polycythemia loom -
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Like -
Helpful -
Hug
1 ReactionHeeey! This is the first time I’ve read someone compare the PV symptoms with those of menopause. I am in EXACTLY the same situation. Tingling, headaches, brain fog, flush face, all PV symptoms and all menopause as well. I guess in the end it doesn’t matter which is causing what, as long as we keep our blood counts in check. It really feels like we are being hit with a double play but we move forward. I was diagnosed in January. I’m 56 and began “The change” just over a year ago. I had 6 weekly phlebotomies and then monthly and now I’ve gone 8 weeks. On and off Hydroxyurea. When stopped platelets shot back up so I’m on them for life I’m told. Played with dosage and for 10 weeks I’ve been steady so hoping we got it right. Just 3 X a week which isn’t bad. Also it’s super cheap compared to the other medication that is offered if this one doesn’t work. I wish you luck and look forward to seeing you get this crap under control 😊
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Like -
Helpful -
Hug
3 ReactionsI really enjoy the conversations and support here. I love meeting new people and hearing their own personal stories. Thank you for yours!! I love my family so much and want to make sure I’m doing all I can to make sure I stay as healthy as I can for as long as I can!!❤️
-
Like -
Helpful -
Hug
4 ReactionsI was just diagnosed in April and have had 5 phlebotomies. The crashing headaches stopped after 4 draws. The fatigue and achy joints is still with me and numbers are good, CBC yesterday I was at 12.8. I don't take meds other than a low dose aspirin daily right now. I do take Adderall for my ADHD which I need & it helps.
My oncologist told me at my first visit that I'd not likely need a bone marrow biopsy for a couple/few years. I did ask him about gummies the first visit, at least I believe so, I'll double check that next week when I see him. I like them to help me get better sleep at times, my brain doesn't like to shut off 😉
Hard to rest as a single Mom, I raised my 3 but they're all grown. My grands are 16&14. If at all possible ask for some help from family & friends. I'm blessed with many who help when I need it. My problem was asking.
My girlfriend knows I'm a visual person, she put together a color coded systems with magnets I put on fridge and if I have a purple day (very busy), I have 2-3 blue days following which are essentially resting. I don't like it but the hope is the days of rest needed get fewer and fewer. My idea of not doing much apparently to others is doing a lot 🙃
Good luck, ask away, this is a great group. It takes a village 💪 🙏 ❤️
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Like -
Helpful -
Hug
3 ReactionsSorry typing slip OV = PV ..
Will the biopsy give a definite answer to pv? My current research says (may) which I think isn't definitive.
I have just added elevated glucose to my labs. I've asked for an earlier appt to discuss philbotomy in hopes of feeling better. I'm just getting confused because I don't have a positive JAK, my spleen and other organs are not inflamed but I do have elevated labs, severe exhaustion, itchy, recent eye issues etc. My checks can get red and look like rosea at times and the heat is just intolerable. I wonder if the bone biopsy would give a definite answer. If not then I suppose it's going to be an educated guess.