Polycythemia Vera and low iron

The low iron level is a sore point with all of us PVers. At 75 yrs old, I find that an afternoon nap (about 45 mins) is a must for me to get through a 15 hr day. I wish I could tell you there is a distinct pattern to this disease but I can't find one. My WBCs go down. My WBCs go up. My platelets go up. My platelets remain the same.
I wish there was a magic bullet for this thing, but I have not found it yet.
The skin cancer complications with the drugs is annoying. I have had a total of 10 MOHS procedures now.
Hang in there. Its a "marathon not a sprint".

@jerrlin I have PV. 500 mg hydrea ,9 a week. Phlebotomy about every 4-6 weeks. Iron deficiency. Oncologist says no iron supplement. You are fortunate.

@klm1235567 I’m 72 and was Diagnosed three years ago with PV and take 500mg Hydroxy urea and 81mg aspirin daily. Phlebotomy is taken if Hematocrit number is 45 or higher. I’ve not had one for two months. Seems the medicine is working fine. Yet told I now have low iron as a result of phlebotomies in the past. Was having one maybe every month then went every other month during these three years. Yes fatigue is part of this cancer. A nap every day helps. My concern is the doctor wants me to stop my HU medication and start Jakaf. Concerned as to why if the HUrea is keeping my Hematocrit number down. Said I could never stop cold turkey the Jakaf once started. I would have to wean myself off it. Sound scary and from the others who’ve taken Jakaf it doesn’t help with fatigue. Think I will talk to doctor and express I’m not wanting it and stay on HUrea a few more months hoping it will keep number under 45. Will anyone want to suggest or comment their experiences with why changing meds is necessary?

@livingston44 Have you had skin cancer from taking HydroxyUrea? My doctor wants me to switch medications and take Jakafi. I’m 72 and diagnosed three years ago. Told the phlebotomies have causes my low iron. Jakafi will not help with low iron I understand. Have you switched medications this soon and did it help with fatigue and fewer phlebotomies?

On Wed, Apr 29, 2026 at 12:02 PM Mayo Clinic Connect < nf+8a3dbe8f+115560861@n1.hubapplication.com> wrote:

> ## reply above this line ##
>
>
> 78 yrs old now.Diagnosed with PV and ET four years ago. JAK 2 mutation. I
> take nine(9) 500 mg hydrea pills a week and a baby aspirin daily. I have
> a phlebotomy about every five(5) weeks. Fatigue is a problem, and achy in
> muscles and joints. Light headed some. Little energy but I continue to push
> myself to exercise. Sleep is a problem. Ferritin at 8.69 and iron at 16.
> Would love to have iron level of 30-40…but then hct increases. Sticky
> blood. A ‘Catch 22’. New norm. I am very reluctant to change meds until
> absolutely necessary. There are no easy answers. Embrace it.
> Mayo Clinic Connect
> @1hostahoney
> < https://connect.mayoclinic.org/member/00-37ae105f0b8cf559332826/;
> mentioned you in comment on Wed, Apr 29.
>
> *Message*
> @klm1235567 I’m 72 and was Diagnosed three years ago with PV and take
> 500mg Hydroxy urea and 81mg aspirin daily. Phlebotomy is taken if
> Hematocrit number is 45 or higher. I’ve not had one for two months. Seems
> the medicine is working fine. Yet told I now have low iron as a result of
> phlebotomies in the past. Was having one maybe every month then went every
> other month during these three years. Yes fatigue is part of this cancer. A
> nap every day helps. My concern is the doctor wants me to stop my HU
> medication and start Jakaf. Concerned as to why if the HUrea is keeping my
> Hematocrit number down. Said I could never stop cold turkey the Jakaf once
> started. I would have to wean myself off it. Sound scary and from the
> others who’ve taken Jakaf it doesn’t help with fatigue. Think I will talk
> to doctor and express I’m not wanting it and stay on HUrea a few more
> months hoping it will keep number under 45. Will anyone want to suggest or
> comment their experiences with why changing meds is necessary?
> VIEW & REPLY
> < https://connect.mayoclinic.org/notification/115560861/;
> ------------------------------
> Unsubscribe
> < https://connect.mayoclinic.org/email/unsubscribe/email-setting/;
> from this content and see links to review my email settings.
>

@1hostahoney I have PV JAK2 positive and take Hydroxyurea also. My doctor wants to increase to lessen phlebotomies. Currently every 8-10 weeks to keep numbers in check but it gives me too much tooth nerve pain and extreme sun sensitivity if I take too much. So she wants to switch me to Jakafi to lessen phlebotomies also. BUT there is a new drug that should be coming out by end of this year called RUSFERTIDE? It tricks the bone barrow into making less cells which lessens and sometimes eliminates the need for phlebotomies . Look it up. I’m waiting for it.

Aspirin lowers your ferritin I have reduced my dose to 3x a week. It seems to be helping my fatigue

@rmegg Really? That’s the first time I’ve heard that. My MPN specialist took me off aspirin late last fall. A lot of new studies on it are questioning its broad use. Thanks for sharing.

Do you have any abdominal bloating and pain associated with this condition I've been tested for everything but pv I have a epo of 4.2 and high hemoglobin and high hemocrit for over a year just curious what if any symptoms you got later as you were asymptomatic before diagnosed

@jonnypouchw I had a red face and some occasional stinging in my shin bones. Some muscle and joint pain also but I’m menopausal so I disregarded that. No stomach issues until put in the hydroxyurea. I’m going to look up the aspirin and iron level thing but the aspirin is supposed to keep the blood thin to avoid clots so not sure if it would be good to cut it down?