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!
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’m mid-forties with ET trending toward PV. My kids are seven and its been really stressful to think about how this will impact our future. I’m also a single mom, and have used gummies to keep the stress down on the past so I’m wondering how things will works once I’m on meds. These meds seem to have quite a few side effects.
Curious, but did everyone do a bone marrow biopsy before official PV diagnosis?
My official PV diagnosis came after blood tests confirmed by positive JAK2 result.. No bone marrow biopsy needed.. This was a little over 2 years ago.. I had 4 phlebotomies and was immediately put on hydroxyurea which I still take every day.. I am one of the “lucky” ones in that I have tolerated the HU with little to no side effects…
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.
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!
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 💪 🙏 ❤️
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.
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 😊
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 -
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.
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!
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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.
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Helpful -
Hug
2 ReactionsMy official PV diagnosis came after blood tests confirmed by positive JAK2 result.. No bone marrow biopsy needed.. This was a little over 2 years ago.. I had 4 phlebotomies and was immediately put on hydroxyurea which I still take every day.. I am one of the “lucky” ones in that I have tolerated the HU with little to no side effects…
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Like -
Helpful -
Hug
1 ReactionWill 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.
Sorry typing slip OV = PV ..
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 💪 🙏 ❤️
-
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!!❤️
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Like -
Helpful -
Hug
4 ReactionsHeeey! 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 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 ReactionMy 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 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 Reactions