71 year old female diagnosed 6 month ago with PV

@beebo I am 70 year old female and I was diagnosed in Dec 2025. I've been on HU 4x week since end of Dec and have been taking weekly blood tests before my next appointment with Hemo on 2/11/26. My question to you is when you first started taking the HU did your numbers go up an down. My platelets have really dropped down to 336, but my Hcb 15.5 / 16 and Hematocrit goes one or two points up and down every week. 47, 49. Did that happen to you and why to they fluctuate every week, if you know.

@lindakay55 I have ben on HU since September and at that time my hematocrit was 52. By November it was 44. Beginning of December it was45.1 then end of December it was 39.3. At my appointment just yesterday it was 40.5. It's crazy. Maybe dehydration plays a part, I'm not sure. All my other labs are within normal limits. My doctor says things are good and not to worry. Easier said than done.

@jeanette1954 Thank you. I guess this fluctuation is normal. At that time were you taking HU only 4x per week or once a day? My platelets are now at 339, but my Hgb this week is at 16 (highest was 16.7 and then 15.5 and now back at 16). My Hematocrit is at 49.2 this week (last week was 47.4 and in Dec was 50.5).

@lindakay55 At diagnoses I started on HU 500mg daily. After 2 months increased to 500mg Monday through Friday and 1000mg on weekends. Now currently on 1000 mg daily. I also take 1 baby aspirin daily and have had 3 phlebotomy s, last one in October. Once my hematocrit stabilizes well below 45, I'm hoping for a decrease in medication.

@lindakay55 Yes! My doctor likened it to the “Whack a Mole “ game at the State Fair. Knock one number down and another one goes up. His primary focus was on Platelet Count. That was the most volatile . I ranged from low 200’s to mid 800’s. Finally got it stabilized in the mid 300 range. The other numbers also seem to have stayed pretty constant since then. I’ve continued on the same dosage since. (500mg 4x/week).

Good Morning, I was diagnosed with PV in 2020 after my diagnosis of CVST and a TIA. I’ve been on a regime of phlebotomies, every three months or every 6 months depending on my hematocrit level, which I agreed to, not HU. I did not like the side effects of that drug and have refused to take it. The phlebotomist are working fine for me. Yes, I have inconsistent elevated blood scores, not concerned about them nor is my doctor. I’m on blood thinners and will be on them for life, due to PV. I’m 72, female, eat healthy, am very active and life goes on.

Hello PV FRIEND
I had PV for almost 20 years
From my perspective, that is a lot of HU PER DAY ! You did not share any other information of what your symptoms are?
Having to deal for so many years with PV , I have experienced many symptoms and side effects. Unfortunately, now I have advanced to a much more serious illness called
MF MYELOFIBROSIS!!
You should be treated by a hematologist oncologist! The symptoms you described are very common with PV !
Read posts by people who have had this illness for years !
Also , look up information on MAYO WEB SITE ! Learn as much as you can so you can ask important questions and understand what the doctors are saying!! Good luck friend

Keep asking questions. I was dx'd three months ago and I'm 64. Im getting a second opinion. Keep asking questions

I would recommend that anyone who has an mpn including PV, ET, and Myelofibrosis consult an mpn specialist to confirm that the treatment they are receiving is appropriate for them. Many hematologists these days have few mpn patients and are not following the latest developments in new drugs or research, so they are only comfortable with prescribing hydroxyurea.
In my case I was on hydroxyurea for several months after 10 weeks of phlebotomy. My hematologist discouraged me from looking at any other drugs. I read several articles about hydroxyurea and Besremi and the takeaway was that hydroxyurea does not do anything to reduce the cancer and can have some nasty side effects like sores and ulcers for a relatively small number of people who stay on it long term. Interferons like Pegasys and Besremi actually can significantly reduce the cancer and lower the risk factors for blood clots and progression to myelofibrosis. I went to see an mpn specialist who agreed that Besremi was a better fit for me. Since I started taking Besremi last February, my allele burden has gone from 91 to 73 and my hope is it will be under 50% in the next year.

My hematoligist talked about Besremi on my first appt. following my diagnosis. I was reluctant because it's fairly new and the side effects ie: depression, mood swings, suicidal thoughts. So I'm taking the hydroxyurea. Did you experience any of the documented side effects? I honestly think Besremi is a better treatment and seriously considering it. But honestly I'm frightened.