Replies to @klm1235567 I’m 72 and was Diagnosed three years ago with PV and take 500mg Hydroxy urea...

← Return to Polycythemia Vera and low iron

Discussion

Blood Cancers & Disorders | Last Active: Jun 12 12:22pm | Replies (34)

Comment receiving replies

@1hostahoney

@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?

Jump to this post

Replies to "@klm1235567 I’m 72 and was Diagnosed three years ago with PV and take 500mg Hydroxy urea..."

klm1235567 | @klm1235567 | Apr 29 1:30pm

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.
>

VIEW AND REPLY