Since PV diagnosis, I've done blood tests once a week for three weeks now, so three tests total.
The highest my results have ever been before HU meds was
HGB 16.7; HCT 50.5; PLT 418.
First test was only on Aspirin.
Second and Third tests were with both Aspirin and HU.
The HU dosage is 500 mg @ 4x week.
The first week my counts went down. HGB 16.7; HCT 50.3; PLT 381
Second week down more. HGB 15.6; HCT 47.9; PLT 356
Third week up a smidge. HGB 16; HCT 49.1; PLT 379
Do they go up and down before settling at some number range?
I'm having more blood tests every week for next five weeks before next doctors appointment.
@lindakay55 My diagnosis was 4 years ago. Started out with testing every two weeks and getting phlebotomies following most of the tests. Then started on hydroxyurea at different doses until my numbers stabilized.
Now getting monthly blood tests and taking 500mg 4x/week. Have not needed a phlebotomy for two years. Numbers are pretty stable but do vary some, like yours do from test to test. I find that being well hydrated when you take the test keeps the numbers in line.
Is it normal to see the HCT, HGB, and PLT all fluctuate when you are doing weekly tests for 8 weeks? I’m trying to determine if you see one move up a point or two does that mean it’s going to continue going up. Or might you see it go back down the following week without any change in meds.
Hello, they may increase the hydroxyurea to get the HCT down but normally you will require a Phlebotomy to control that. It is normal for platelets to fluctuate even while on the meds. Depending on age and other health conditions, your doctor will have a max safe high for that. Mine is 600. I’m 59 with no other Heath issues but diverticulitis. Baby aspirin, Hydroxyurea 5X a week and Phelbotomies about every 8-10 weeks.
Since PV diagnosis, I've done blood tests once a week for three weeks now, so three tests total.
The highest my results have ever been before HU meds was
HGB 16.7; HCT 50.5; PLT 418.
First test was only on Aspirin.
Second and Third tests were with both Aspirin and HU.
The HU dosage is 500 mg @ 4x week.
The first week my counts went down. HGB 16.7; HCT 50.3; PLT 381
Second week down more. HGB 15.6; HCT 47.9; PLT 356
Third week up a smidge. HGB 16; HCT 49.1; PLT 379
Do they go up and down before settling at some number range?
I'm having more blood tests every week for next five weeks before next doctors appointment.
@lindakay55 Hello!
I was diagnosed with PV/JAK2 about five years ago. I had my regular soot with my GP for blood work to check my thyroid levels. The nightmare before and morning of appt I had a terrible pain in my knee. They took blood and sent me for a knee X-ray.
My GP, looking quite shocked, told me my hematocrit level was very high and because I had suffered from severe anemia all through my 20-40’s, I asked if it had something to do with that. He explained it was pretty much the opposite. He also told me the pain in my knee was probably from gout because my uric acid level was way too high.
He sent me for a JAK2 blood test and it was positive. Then he told me to find a hematologist asap (I had just moved out of state). It was then I realized it was cancer because, duh, hematologist office was in the “Cancer Center”! My GP of over 40 years hadn’t mentioned it.
I was scared and then I started reading up on PV.
I changed hematologists because I wanted a doctor who listened to my questions and seemed interested in me.
I asked what the prognosis was and calmed down after that discussion. That was over 5 years ago.
I take 1000 mg of Hydroxyurea daily and my benchmark for a phlebotomy I’d my hematocrit at 42 or higher. I started seeing the hematologist every couple of months and having a phlebotomy every couple of months and now I see the doctor every 4 months and phlebotomy about every 4 months. I can feel it in my legs when my hematocrit is 42 or higher, get the blood tested and if I’m right (and I usually am) have the phlebotomy.
In my opinion, there are worse things than phlebotomy and I am horrible to draw blood from. But, it is what it is.
I’m 78. One of the most frustrating things about this, for me, is that they can’t tell me why the hematocrit sometimes stays low or why it will go up. It may have something to do with hydration. The exhaustion I felt (probably from the HU) is not as bad as it was and I’ve learned to rest when I’m tired (I worked for 47 years and I had to learn that).
So, the first thing I’ll say to you is, if you’re scared try to calm down and make a list of questions and ask your doctor for those answers. Hydrate. Exercise and eat healthy.
If you are not comfortable with your doctor or treatment plan, discuss it with your doctor and/or get a second opinion or find another doctor. You are in charge!
I love this forum because PV is rare enough that it’s a good thing to have others going through it and finding some similarities in symptoms and treatment.
So, please ask your questions and share all you want to because no doubt someone here can help.
@lindakay55 Great narrative of your experience with this condition.
My experience with it was very similar to yours in terms of initial diagnosis and what followed. My diagnosis was four years ago and I started with phlebotomy treatments and various dosage levels of HU. Only time I had a reaction to the med was one time I dropped it in a small cup of water and instead of tossing it, I drank it. Major itching for almost a day following that.
I’m now taking 500mg 4x a week and my numbers have stabilized. Still getting monthly blood tests and visits to the doctor are every 6 months.
Connect
Connect
Like
Helpful
Hug
@lindakay55 My diagnosis was 4 years ago. Started out with testing every two weeks and getting phlebotomies following most of the tests. Then started on hydroxyurea at different doses until my numbers stabilized.
Now getting monthly blood tests and taking 500mg 4x/week. Have not needed a phlebotomy for two years. Numbers are pretty stable but do vary some, like yours do from test to test. I find that being well hydrated when you take the test keeps the numbers in line.
-
Like -
Helpful -
Hug
1 ReactionThanks.
Is it normal to see the HCT, HGB, and PLT all fluctuate when you are doing weekly tests for 8 weeks? I’m trying to determine if you see one move up a point or two does that mean it’s going to continue going up. Or might you see it go back down the following week without any change in meds.
Hello, they may increase the hydroxyurea to get the HCT down but normally you will require a Phlebotomy to control that. It is normal for platelets to fluctuate even while on the meds. Depending on age and other health conditions, your doctor will have a max safe high for that. Mine is 600. I’m 59 with no other Heath issues but diverticulitis. Baby aspirin, Hydroxyurea 5X a week and Phelbotomies about every 8-10 weeks.
Since PV diagnosis, I've done blood tests once a week for three weeks now, so three tests total.
The highest my results have ever been before HU meds was
HGB 16.7; HCT 50.5; PLT 418.
First test was only on Aspirin.
Second and Third tests were with both Aspirin and HU.
The HU dosage is 500 mg @ 4x week.
The first week my counts went down. HGB 16.7; HCT 50.3; PLT 381
Second week down more. HGB 15.6; HCT 47.9; PLT 356
Third week up a smidge. HGB 16; HCT 49.1; PLT 379
Do they go up and down before settling at some number range?
I'm having more blood tests every week for next five weeks before next doctors appointment.
@bharty615 Do you have PV?
What is the name of the blood thinner?
@bharty615
Is the blood thinner aspirin? Or HU?
Iwas on every day, developed anemia so was put on 3x week plus baby
aspirin 2 a day. now taking blood thinner so no phlebotomy
it's chronic not really going to kill you. my problem is I get itchy. now
that I am taking blood
thinner I get fewer phlebotomy.
I have been put on blood thinner because ofheart and nowfind don;t need
phlebotomy
-
Like -
Helpful -
Hug
1 Reaction