The specialist I seen asked my husband and I that question too. I do not snore while sleeping. I do however have issues waking up at all hours of the night and can’t get back to sleep.
I was diagnosed in April 2022 with PV didn't experience any leg or arm pain you described. When I started this journey my personal dr. examined my nose and asked if I had ever broken it. Not to my knowledge had I but could think of a couple times where it could of gotten broke. During a previous hospital stay I was told my O2 was dropping below 90% and should have a sleep study done. Since the April diagnosis I have started wearing a breathe right strip when I sleep and sometimes through the day. This has helped my O2 level at night now low to mid ninetys%. I did have a sleep study done recently the results were not very alarming they said I could get a cpap but I feel they were looking more at the $$$$$. I truly believe that when my O2 levels were low at night for so many years (I'm 55) I developed PV. Add a swing shift job for 25 years which brought poor sleep habits didn't help much.
Hi @learnandlive I recently learned that PV can be related to sleep apnea as well. My RBC and Hematocrit continue to rise for no reason. I was so surprised when my transplant doctor asked me out of the blue at my last visit, if I snored or have sleep apnea! I was shocked to hear my husband reply that I did, with lots of joking. LOL.
Anyway, I’m surprised because I really don’t fit the profile of sleep apnea as I don’t have any of the daytime symptoms of being exhausted, distracted, foggy, etc. And I’m not overweight but, I’ve learned in this lifetime we don’t all fall into neat little packages for a diagnosis.
My doctor wants to try the sleep apnea route first before testing for JAK2. Since this is slowly developing and I already had a bone marrow transplant for another blood disease.
My sleep study will be coming up on Dec 21. So I’ll let you know more. If we have sleep apnea it would explain why our body (kidney’s actually) to call for more oxygen and then our RBC manufacturing kicks into high gear.
Thank you for your reply. I live a very active life and job and have swiftly lost energy over he course of this disease. I am looking for any answers to improve my quality of life. I really appreciate sharing with others . Look forward to hearing from you in the future.
Hi @vmg44 I also have my home oximetry test coming up on Dec 21 to see if sleep apnea is related to my increasing RBC and hematocrit. There’s no firm diagnosis of PV for me yet, but the trending upward of my numbers has my transplant doctor who is also a hematologist/oncologist raising his eyebrows. I was surprised by the possible correlation between increasing RBC and sleep apnea.
It will be interesting to see what your and my results reveal. Let me know, ok?
I have had PV with JAK2 for over 4 years. Started with phlebotomies and Hydrea, now on Jakafi. I just recently found sleep apnea may be related to PV. Sleep study will be done in March. If anyone has info on apnea and PV please post, thanks
Hi @learnandlive I recently learned that PV can be related to sleep apnea as well. My RBC and Hematocrit continue to rise for no reason. I was so surprised when my transplant doctor asked me out of the blue at my last visit, if I snored or have sleep apnea! I was shocked to hear my husband reply that I did, with lots of joking. LOL.
Anyway, I’m surprised because I really don’t fit the profile of sleep apnea as I don’t have any of the daytime symptoms of being exhausted, distracted, foggy, etc. And I’m not overweight but, I’ve learned in this lifetime we don’t all fall into neat little packages for a diagnosis.
My doctor wants to try the sleep apnea route first before testing for JAK2. Since this is slowly developing and I already had a bone marrow transplant for another blood disease.
My sleep study will be coming up on Dec 21. So I’ll let you know more. If we have sleep apnea it would explain why our body (kidney’s actually) to call for more oxygen and then our RBC manufacturing kicks into high gear.
I have had PV with JAK2 for over 4 years. Started with phlebotomies and Hydrea, now on Jakafi. I just recently found sleep apnea may be related to PV. Sleep study will be done in March. If anyone has info on apnea and PV please post, thanks
I also have been diagnosed Nov. 25th with Polycythemia my doctor is highly confident that it is Polycythemia Vera we are still waiting for the test to confirm. My hemoglobin after my first phlebotomy is 20.5 and hematocrit 62.4. I started hydroxyurea 2x500mg a day. My Erythropoietin Level is 1.2mIU/mL. Phlebotomys are scheduled every week until Jan.26. I will meet with the doctor at the end of December to discuss next steps. It seems like we are beginning a journey that started just weeks ago.
I was diagnosed with PV three weeks ago with hemoglobin at 19.9 and a hematocrit of 59.9%. The doctor started me on hydroxyurea and phlebotomy every two weeks. After two weeks my hemoglobin is down to 18.7 and my hematocrit 55.6%. I'm scheduled for a guided bone marrow biopsy in January. Does this sound familiar to anyone?
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I was diagnosed in April 2022 with PV didn't experience any leg or arm pain you described. When I started this journey my personal dr. examined my nose and asked if I had ever broken it. Not to my knowledge had I but could think of a couple times where it could of gotten broke. During a previous hospital stay I was told my O2 was dropping below 90% and should have a sleep study done. Since the April diagnosis I have started wearing a breathe right strip when I sleep and sometimes through the day. This has helped my O2 level at night now low to mid ninetys%. I did have a sleep study done recently the results were not very alarming they said I could get a cpap but I feel they were looking more at the $$$$$. I truly believe that when my O2 levels were low at night for so many years (I'm 55) I developed PV. Add a swing shift job for 25 years which brought poor sleep habits didn't help much.
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1 ReactionHi, please keep posting as you get information on tour progress and tests. your feedback is appreciated.
Thank you for your reply. I live a very active life and job and have swiftly lost energy over he course of this disease. I am looking for any answers to improve my quality of life. I really appreciate sharing with others . Look forward to hearing from you in the future.
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1 ReactionYes I will, forward we go.
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1 ReactionHi @vmg44 I also have my home oximetry test coming up on Dec 21 to see if sleep apnea is related to my increasing RBC and hematocrit. There’s no firm diagnosis of PV for me yet, but the trending upward of my numbers has my transplant doctor who is also a hematologist/oncologist raising his eyebrows. I was surprised by the possible correlation between increasing RBC and sleep apnea.
It will be interesting to see what your and my results reveal. Let me know, ok?
Hi @learnandlive I recently learned that PV can be related to sleep apnea as well. My RBC and Hematocrit continue to rise for no reason. I was so surprised when my transplant doctor asked me out of the blue at my last visit, if I snored or have sleep apnea! I was shocked to hear my husband reply that I did, with lots of joking. LOL.
Anyway, I’m surprised because I really don’t fit the profile of sleep apnea as I don’t have any of the daytime symptoms of being exhausted, distracted, foggy, etc. And I’m not overweight but, I’ve learned in this lifetime we don’t all fall into neat little packages for a diagnosis.
My doctor wants to try the sleep apnea route first before testing for JAK2. Since this is slowly developing and I already had a bone marrow transplant for another blood disease.
My sleep study will be coming up on Dec 21. So I’ll let you know more. If we have sleep apnea it would explain why our body (kidney’s actually) to call for more oxygen and then our RBC manufacturing kicks into high gear.
Let’s keep in touch, ok?
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2 ReactionsToday I received results for the JAK2 V617F test and I am positive. A home sleep study is scheduled Dec. 21.
I have had PV with JAK2 for over 4 years. Started with phlebotomies and Hydrea, now on Jakafi. I just recently found sleep apnea may be related to PV. Sleep study will be done in March. If anyone has info on apnea and PV please post, thanks
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Like -
Helpful -
Hug
2 ReactionsI also have been diagnosed Nov. 25th with Polycythemia my doctor is highly confident that it is Polycythemia Vera we are still waiting for the test to confirm. My hemoglobin after my first phlebotomy is 20.5 and hematocrit 62.4. I started hydroxyurea 2x500mg a day. My Erythropoietin Level is 1.2mIU/mL. Phlebotomys are scheduled every week until Jan.26. I will meet with the doctor at the end of December to discuss next steps. It seems like we are beginning a journey that started just weeks ago.
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Helpful -
Hug
2 ReactionsI was diagnosed with PV three weeks ago with hemoglobin at 19.9 and a hematocrit of 59.9%. The doctor started me on hydroxyurea and phlebotomy every two weeks. After two weeks my hemoglobin is down to 18.7 and my hematocrit 55.6%. I'm scheduled for a guided bone marrow biopsy in January. Does this sound familiar to anyone?