I was diagnosed PV in April ‘22, with JAK2 gene. Bloodlettings and Hydroxurea were prescribed. The former improved a high red spots in different parts of my face, the latter my headaches and odd & painful sensations in my legs. Did nothing for fatigue and made me very nauseous. Overall not very effective so was switched to Jakafi 10 mg. This improved platelets and blood count more effectively but fatigue remained as well as leg sensations. Then platelets started to rise again and switched to 20mg. Overnight the fatigue seemed to have gone and the sensations in legs are a lot less…. Now my blood tests are only about the platelets. 🥹
I was diagnosed PV in April ‘22, with JAK2 gene. Bloodlettings and Hydroxurea were prescribed. The former improved a high red spots in different parts of my face, the latter my headaches and odd & painful sensations in my legs. Did nothing for fatigue and made me very nauseous. Overall not very effective so was switched to Jakafi 10 mg. This improved platelets and blood count more effectively but fatigue remained as well as leg sensations. Then platelets started to rise again and switched to 20mg. Overnight the fatigue seemed to have gone and the sensations in legs are a lot less…. Now my blood tests are only about the platelets. 🥹
I also have PV and shortness of breath but you are right, if you stop for a moment it does adjust. I was told not to have iron rich foods as it feeds the growth of red blood cells.I also am noticing hair loss and Dr says it’s not from the phlebotomy’s. Any suggestions on this. I have had PV since 2019
Try Deep Breathing, Yoga style. It works for me, also cures PV headaches. I won't try to describe how to do it because I'm not trained in this method but read how to do it in Hatha Yoga books.
I was diagnosed in 2001 with PV/ jak2 mutated with blood withdrawals until 2012 Myelofibrosis diagnosed and I now needed blood transfusions which caused my ferritin levels to climb to over 4,000 (off the charts). Went from a study drug to Jakafi after FDA approval of the drug and remain on it. In about 2016 started doing self injections of Aranesp to force body to make blood, ending need for transfusions ( so far) & hoping to bring down ferritin levels.
Through all of this I have been short of breath, in 2012 I got supplemental oxygen especially needed when I swim, exercise or walk beyond the house. As my hemoglobin declines and anemia sets in, a day or two before each Aranesp injection is due, I am back on oxygen.
So over 20 years after first diagnosed with PV, I am still around, happy to give my heart a break with a boost of oxygen when needed!
I started taking biotin capsules or gummies daily and my nearly bald head starting growing hair again! Be patient it takes a few months. Still a little sparse, but no more wigs!
I started taking biotin capsules or gummies daily and my nearly bald head starting growing hair again! Be patient it takes a few months. Still a little sparse, but no more wigs!
I have found that when I'm in full nutritional ketosis, the time between my phlebotomies can increase from 4-weeks to up to five months! A diet that puts you in nutritional ketosis is very low in carbohydrates and sugar in any form. You should consult with your medical care team before making a significant change to your diet to ensure that it is safe for you to do. This has been my personal experience and your milage may vary, but it does tend to make sense that you deprive the cancer of the food sources that feed it it will slow the blood production down.
Thanks for sharing about the hair loss...thankfully I have a thick head of hair since I lose so much every day. I am seeing lung specialist due to the shortness of breath. I am on 3 inhalers and have a nebulizer. They thought it was COPD, but my lung test is showing asthma. They have ordered sleep study to rule out sleep apnea. The asthma diagnosis was shocking - I have never even suspected asthma...lol! The inhalers have been a lifesaver.
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I was diagnosed PV in April ‘22, with JAK2 gene. Bloodlettings and Hydroxurea were prescribed. The former improved a high red spots in different parts of my face, the latter my headaches and odd & painful sensations in my legs. Did nothing for fatigue and made me very nauseous. Overall not very effective so was switched to Jakafi 10 mg. This improved platelets and blood count more effectively but fatigue remained as well as leg sensations. Then platelets started to rise again and switched to 20mg. Overnight the fatigue seemed to have gone and the sensations in legs are a lot less…. Now my blood tests are only about the platelets. 🥹
Sorry that should read PV ! (Not OV) but don’t know how to go back in to correct. Can you help @colleenyoung !
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3 ReactionsI too have noticed hairloss. I’m supplementing with Priorin and the loss has decreased quite considerably, but be patient. Takes a couple of months.
Thankyou, I will look into that.
Try Deep Breathing, Yoga style. It works for me, also cures PV headaches. I won't try to describe how to do it because I'm not trained in this method but read how to do it in Hatha Yoga books.
I was diagnosed in 2001 with PV/ jak2 mutated with blood withdrawals until 2012 Myelofibrosis diagnosed and I now needed blood transfusions which caused my ferritin levels to climb to over 4,000 (off the charts). Went from a study drug to Jakafi after FDA approval of the drug and remain on it. In about 2016 started doing self injections of Aranesp to force body to make blood, ending need for transfusions ( so far) & hoping to bring down ferritin levels.
Through all of this I have been short of breath, in 2012 I got supplemental oxygen especially needed when I swim, exercise or walk beyond the house. As my hemoglobin declines and anemia sets in, a day or two before each Aranesp injection is due, I am back on oxygen.
So over 20 years after first diagnosed with PV, I am still around, happy to give my heart a break with a boost of oxygen when needed!
-
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Helpful -
Hug
4 ReactionsI started taking biotin capsules or gummies daily and my nearly bald head starting growing hair again! Be patient it takes a few months. Still a little sparse, but no more wigs!
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Helpful -
Hug
2 ReactionsDo you have a trade mark name for these capsules please @kapu52 ?
No, just any US made trusted brand seems to have worked for me.
Thanks for sharing about the hair loss...thankfully I have a thick head of hair since I lose so much every day. I am seeing lung specialist due to the shortness of breath. I am on 3 inhalers and have a nebulizer. They thought it was COPD, but my lung test is showing asthma. They have ordered sleep study to rule out sleep apnea. The asthma diagnosis was shocking - I have never even suspected asthma...lol! The inhalers have been a lifesaver.