I’m no Dr. but I believe the HU is prescribed first.. I was almost 67 when I was diagnosed in spring of 2021… I had 4 phlebotomies(1 per week for a month), was put on aspirin, and HU… My oncologist’s main focus was lowering the HCT which was very high… I should say that I never even heard of PV before I was diagnosed… In my case, I have tolerated the HU very well.. I currently am taking 7500 mg per week.. I am also very active.. I bike every day as long as the weather allows for it and also do a lot of walking… Long sleeves and sunscreen are a must on sunny days… Honestly, despite taking HU, I feel really good.. no symptoms, high energy, no issues.. I also understand that some people cannot tolerate HU at all… It effects people differently… Hope this helps and best of luck to you and your husband..
Hello everyone! I was diagnosed 3 months ago with pv and secondary eryth(not sure how to spell it). I have been doing phlebotomy once a month for 3 months. Started with 300 CC and now at 500 CC since my numbers are still climbing. I tested negative for Jak2. I am so confused as to what to ask my doctor or how to move forward. I have not had bone marrow biopsy, but I have all the symptoms of PV. My big toe kills me on both feet. My skin is flushed on my face and arms. I am so fatigued and keep a headache. I have shortness of breath. I am seeing lung doctor and heart doctor this month. My journey started with a tumor on my spinal cord in Feb that could not be completely removed. My back pain has not improved and my doctor checked my CBC for 3 months before referring to oncologist. No one tells you anything really - and I feel a little lost. Any advice on the Jak2 neg and my numbers not responding with phlebotomies? Also what is normal on the phlebotomy? Sorry this is so long...what questions should I ask my doctor? Help....
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.
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
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!
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.
Connect
Connect
Like
Helpful
Hug
I’m no Dr. but I believe the HU is prescribed first.. I was almost 67 when I was diagnosed in spring of 2021… I had 4 phlebotomies(1 per week for a month), was put on aspirin, and HU… My oncologist’s main focus was lowering the HCT which was very high… I should say that I never even heard of PV before I was diagnosed… In my case, I have tolerated the HU very well.. I currently am taking 7500 mg per week.. I am also very active.. I bike every day as long as the weather allows for it and also do a lot of walking… Long sleeves and sunscreen are a must on sunny days… Honestly, despite taking HU, I feel really good.. no symptoms, high energy, no issues.. I also understand that some people cannot tolerate HU at all… It effects people differently… Hope this helps and best of luck to you and your husband..
-
Like -
Helpful -
Hug
2 ReactionsHello everyone! I was diagnosed 3 months ago with pv and secondary eryth(not sure how to spell it). I have been doing phlebotomy once a month for 3 months. Started with 300 CC and now at 500 CC since my numbers are still climbing. I tested negative for Jak2. I am so confused as to what to ask my doctor or how to move forward. I have not had bone marrow biopsy, but I have all the symptoms of PV. My big toe kills me on both feet. My skin is flushed on my face and arms. I am so fatigued and keep a headache. I have shortness of breath. I am seeing lung doctor and heart doctor this month. My journey started with a tumor on my spinal cord in Feb that could not be completely removed. My back pain has not improved and my doctor checked my CBC for 3 months before referring to oncologist. No one tells you anything really - and I feel a little lost. Any advice on the Jak2 neg and my numbers not responding with phlebotomies? Also what is normal on the phlebotomy? Sorry this is so long...what questions should I ask my doctor? Help....
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.
-
Like -
Helpful -
Hug
2 ReactionsHi @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?
-
Like -
Helpful -
Hug
3 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
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!
-
Like -
Helpful -
Hug
2 ReactionsI 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 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.
-
Like -
Helpful -
Hug
1 ReactionYes I will, forward we go.
-
Like -
Helpful -
Hug
1 Reaction