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.
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?
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.
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.
I use an APAP machine for sleep apnea. It is WONDERFUL when utilized with a minimalistic-style mask, like a P-10 with 'pillows.' If an APAP or CPAP machine is prescribed, please do not hesitate to try it.
NB: The full-face mask was a miserable experience. You get to choose the mask when they order your device. Get the one you want!
My 67 yo husband recently diagnosed with pv (had biopsy). No history of thrombosis events. Phlebotomy plus aspirin lowered rbc and hematocrit 46 but platelets still 500. Because of age risk, Doc wants to start HU. Wondering if an interferon drug is ever used first instead of HU?? I’m worried about side effects. He’s very active outside and worried of skin cancer risks
My 67 yo husband recently diagnosed with pv (had biopsy). No history of thrombosis events. Phlebotomy plus aspirin lowered rbc and hematocrit 46 but platelets still 500. Because of age risk, Doc wants to start HU. Wondering if an interferon drug is ever used first instead of HU?? I’m worried about side effects. He’s very active outside and worried of skin cancer risks
My 67 yo husband recently diagnosed with pv (had biopsy). No history of thrombosis events. Phlebotomy plus aspirin lowered rbc and hematocrit 46 but platelets still 500. Because of age risk, Doc wants to start HU. Wondering if an interferon drug is ever used first instead of HU?? I’m worried about side effects. He’s very active outside and worried of skin cancer risks
Hello brooks7987, I have had PV w/JAK2 for over 5 years. I started on Hydroxurea almost immediately . I am also very active outdoors and had to change some habits, sunscreen, hats, UV shirts (even in water activities) all help. I had no problems and had twice yearly checkups with dermatolgist. I have recently replaced Hydroxurea with Jakafi. Hydroxurea did sap my energy level and the switch helps.
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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 ReactionsHi @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?
Yes I will, forward we go.
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1 ReactionThank 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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Like -
Helpful -
Hug
1 ReactionHi, please keep posting as you get information on tour progress and tests. your feedback is appreciated.
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.
-
Like -
Helpful -
Hug
1 ReactionI use an APAP machine for sleep apnea. It is WONDERFUL when utilized with a minimalistic-style mask, like a P-10 with 'pillows.' If an APAP or CPAP machine is prescribed, please do not hesitate to try it.
NB: The full-face mask was a miserable experience. You get to choose the mask when they order your device. Get the one you want!
-
Like -
Helpful -
Hug
2 ReactionsMy 67 yo husband recently diagnosed with pv (had biopsy). No history of thrombosis events. Phlebotomy plus aspirin lowered rbc and hematocrit 46 but platelets still 500. Because of age risk, Doc wants to start HU. Wondering if an interferon drug is ever used first instead of HU?? I’m worried about side effects. He’s very active outside and worried of skin cancer risks
Hi @brooks7987, welcome. I moved your question about HU (hydroxyurea) and interferon to this existing discussion:
- Polycythemia Vera: Just been diagnosed https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
I did this so you can read past posts and connect easily with fellow PV members like @lindaw123 @kibbykyle @learnandlive @randles14.
You may also be interested in these related discussions:
- How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
- When is hydroxurea usually added to treat polycythemia vera (PV)? https://connect.mayoclinic.org/discussion/hydroxurea/
Have you discussed your concerns about skin cancer risk and your husband's active outdoor lifestyle with his doctor?
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3 ReactionsHello brooks7987, I have had PV w/JAK2 for over 5 years. I started on Hydroxurea almost immediately . I am also very active outdoors and had to change some habits, sunscreen, hats, UV shirts (even in water activities) all help. I had no problems and had twice yearly checkups with dermatolgist. I have recently replaced Hydroxurea with Jakafi. Hydroxurea did sap my energy level and the switch helps.
-
Like -
Helpful -
Hug
2 Reactions