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I was diagnosed with polycythemia Vera JAK2+ in November 2023. I was prescribed daily aspirin and hydroxycarbamide 500 mg taken Monday to Friday, with Saturday and Sunday off. I had 4 Venesections in the first two weeks and then once two weeks later. After complaining about feeling constant headaches
I was diagnosed with polycythemia Vera JAK2+ in November 2023. I was prescribed daily aspirin and hydroxycarbamide 500 mg taken Monday to Friday, with Saturday and Sunday off. I had 4 Venesections in the first two weeks and then once two weeks later. After complaining about feeling constant headaches
Greengolfer
in
MPN Voice
2 months ago
Pegasys Update 1.0
Finally getting around to sharing my experiences of starting Pegasys. First a little background. Diagnosed with ET JAK2+ in 2019 after a decade of scintillating scotomas with increasing frequency at almost weekly. Aspirin cut this to approx. 90 days! Over the next three years increasingly struggled with
Finally getting around to sharing my experiences of starting Pegasys. First a little background. Diagnosed with ET JAK2+ in 2019 after a decade of scintillating scotomas with increasing frequency at almost weekly. Aspirin cut this to approx. 90 days! Over the next three years increasingly struggled with
Crossefield
in
MPN Voice
4 months ago
Update on vitamin 12 and my treatment plan for PV diagnosed in December 2022
I've been on 45 peg interferon since February every two weeks but my Hematocrit level is still at 49 so hence needing a
venesection
in may and also needing another one now .
I've been on 45 peg interferon since February every two weeks but my Hematocrit level is still at 49 so hence needing a
venesection
in may and also needing another one now .
Blonde25
in
MPN Voice
11 months ago
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Change HCT behaviour- No clear explanation
Hi Jak 2 Positive PV diagnosed 6.5 years ago- Aspirin 0.75mg and until now
Venesection
every 3-4 mths Recently moved home and changed hospital care. During the transition I had my last
venesection
Oct 27th.
Hi Jak 2 Positive PV diagnosed 6.5 years ago- Aspirin 0.75mg and until now
Venesection
every 3-4 mths Recently moved home and changed hospital care. During the transition I had my last
venesection
Oct 27th.
Andyf24
in
MPN Voice
1 year ago
Changing blood results x
Hi, I'm on 90mcg of Pegasys Interferon at present and my HCT and platelets are finally reducing without
venesection
which it good....but my most recent plasma viscosity was 185...and my RDW was 18% which it has been for a while. Should I be concerned about this?
Hi, I'm on 90mcg of Pegasys Interferon at present and my HCT and platelets are finally reducing without
venesection
which it good....but my most recent plasma viscosity was 185...and my RDW was 18% which it has been for a while. Should I be concerned about this?
RCBr
in
MPN Voice
1 year ago
platelet action level
My consultant recommends that they monitor my blood level and treat it with
venesection
and a daily dose of aspirin. Steadily my platelet count has been rising towards 1000 while my haematocrit has remained steady below the threshold of 0.45.
My consultant recommends that they monitor my blood level and treat it with
venesection
and a daily dose of aspirin. Steadily my platelet count has been rising towards 1000 while my haematocrit has remained steady below the threshold of 0.45.
STK52
in
MPN Voice
8 months ago
Potential adverse effects of long-term venesection used to treat PV.
Silver quoted some potential adverse effects from long-term use of
venesection
(AKA phlebotomy) to manage PV. I had seen those findings previously in the literature. I have also experienced some of them myself. I was wondering what ChatPGT would say if asked.
Silver quoted some potential adverse effects from long-term use of
venesection
(AKA phlebotomy) to manage PV. I had seen those findings previously in the literature. I have also experienced some of them myself. I was wondering what ChatPGT would say if asked.
hunter5582
in
MPN Voice
1 year ago
To BMB or not?
Anyway, I got a
venesection
and rechecked my levels at 4 weeks & everything thing was back in the normal range. I tested negative for the JAK2 mutation & my EPO was 8.0.
Anyway, I got a
venesection
and rechecked my levels at 4 weeks & everything thing was back in the normal range. I tested negative for the JAK2 mutation & my EPO was 8.0.
Confusingdisease
in
MPN Voice
11 months ago
Fatigue
Treatment has been baby aspirin and
venesection
. I am now anaemic and suffering to the point its effecting my work and home life.
Treatment has been baby aspirin and
venesection
. I am now anaemic and suffering to the point its effecting my work and home life.
iswhatitis1
in
MPN Voice
1 year ago
platelets down . Hematocrit up
Hello all … this is my very first post on this so so helpful site . My partner was diagnosed with MPN in March … ( elevated platelets but also elevated red cells ) our haematologist says he has MPD , diagnosed after mild MI from which he is fully recovered thankfully . Was started on Hydroxia ..
Hello all … this is my very first post on this so so helpful site . My partner was diagnosed with MPN in March … ( elevated platelets but also elevated red cells ) our haematologist says he has MPD , diagnosed after mild MI from which he is fully recovered thankfully . Was started on Hydroxia ..
Curlynik
in
MPN Voice
7 months ago
Vensection
I have had E.T Jak 2 positive for over 3 year now, I have now had 4 venesectlons as my hemocrit slightly high, does this happen with E.T? I asked hematologist if this means I have progressed to P.V and she told me no but it can vary going from E T to PV. They don't actually tell you much, I am only on
I have had E.T Jak 2 positive for over 3 year now, I have now had 4 venesectlons as my hemocrit slightly high, does this happen with E.T? I asked hematologist if this means I have progressed to P.V and she told me no but it can vary going from E T to PV. They don't actually tell you much, I am only on
doglover49
in
MPN Voice
7 months ago
Query
(Previously the other way around) or
venesection
, which in the past made me very tired. I am iron deficiency all of the time anyway. Which do you think would be the better option? Thanks.
(Previously the other way around) or
venesection
, which in the past made me very tired. I am iron deficiency all of the time anyway. Which do you think would be the better option? Thanks.
Mcrg
in
MPN Voice
1 year ago
Managing ferritin levels with PV
Nobody has mentioned checking this in the past until I was due for another
venesection
and the Haematology Unit manager called and cancelled the appointment partly down to my being at my target HCT level, but also due to my low ferritin level.
Nobody has mentioned checking this in the past until I was due for another
venesection
and the Haematology Unit manager called and cancelled the appointment partly down to my being at my target HCT level, but also due to my low ferritin level.
Transporter
in
MPN Voice
1 year ago
JAK2 Equivocal 1-3% 0 PV Dx - now not being detected
Hi All A little update and question. Been a while since I was on. I have PV with JAK2 + but always at low level 1-3% which technically is below WHO criteria but BM biopsy showed some markers. HCT was high along with other bloods but following 2 venesections which made me anaemic and low iron. JAK2
Hi All A little update and question. Been a while since I was on. I have PV with JAK2 + but always at low level 1-3% which technically is below WHO criteria but BM biopsy showed some markers. HCT was high along with other bloods but following 2 venesections which made me anaemic and low iron. JAK2
LittleLuna
in
MPN Voice
8 months ago
One year on!
There has been a discussion on here today about how fantastically supportive this group is. I would like to add my voice to this on this, my first Re-Birthday! On 1st September 2022 I watched new healthy stem cells trickle into my veins giving me my life back. I am so grateful to everyone who cared for
There has been a discussion on here today about how fantastically supportive this group is. I would like to add my voice to this on this, my first Re-Birthday! On 1st September 2022 I watched new healthy stem cells trickle into my veins giving me my life back. I am so grateful to everyone who cared for
Otterfield
in
MPN Voice
8 months ago
High blood pressure.
My last reading before
Venesection
2 weeks ago was 140/85.At an appoinment last year with Cardiologist he suggested doxazosin l decided against taking this as the side effects were too risky. From my experience l seem to tolerate well thiazide duretics.
My last reading before
Venesection
2 weeks ago was 140/85.At an appoinment last year with Cardiologist he suggested doxazosin l decided against taking this as the side effects were too risky. From my experience l seem to tolerate well thiazide duretics.
Hidden
in
MPN Voice
1 year ago
Besremi temperature problem
I was diagnosed with PV in August 2021 and was on Hydrea for about a year+, then switched to Besremi December 29, 2022, currently at 150 mcg. It's going well, but my HCT and Platelets are still trending up somewhat, have periodic venesections, last one in June. Hopefully time will continue to work
I was diagnosed with PV in August 2021 and was on Hydrea for about a year+, then switched to Besremi December 29, 2022, currently at 150 mcg. It's going well, but my HCT and Platelets are still trending up somewhat, have periodic venesections, last one in June. Hopefully time will continue to work
C_Anne_Orange
in
MPN Voice
9 months ago
B12 deficiency
Hi, my latest blood results are showing a low level of vitamin B12 and vitamin D. I have PV and take hydroxycarbomide 500 and 1000 on alternate days. Platelets are fine but htc is 46.8. HTC has been above 45 for the last 3 months and have had 2 venesections. Is the low levels of vitamins to be expected
Hi, my latest blood results are showing a low level of vitamin B12 and vitamin D. I have PV and take hydroxycarbomide 500 and 1000 on alternate days. Platelets are fine but htc is 46.8. HTC has been above 45 for the last 3 months and have had 2 venesections. Is the low levels of vitamins to be expected
Ellipops
in
MPN Voice
9 months ago
Update 7.5
The one advantage to doing a second
venesection
within six months would be that I would qualify for the Rusfertide clinical trial. I am interested in the potential of combination therapy but would prefer mono-therapy with Besremi providing I tolerate a higher dose. We will see how things go.
The one advantage to doing a second
venesection
within six months would be that I would qualify for the Rusfertide clinical trial. I am interested in the potential of combination therapy but would prefer mono-therapy with Besremi providing I tolerate a higher dose. We will see how things go.
hunter5582
in
MPN Voice
1 year ago
Leg pains
Hello, I hope everyone is well 😊I just wanted to ask if anyone has eg pains. I have PV nearly 2 years diagnosed, on venesections and asprin, but may be going onto meds. I have always had burning in my hands and feet, with a bit of discomfort in my legs. Recent it had got so much worse, never goes
Hello, I hope everyone is well 😊I just wanted to ask if anyone has eg pains. I have PV nearly 2 years diagnosed, on venesections and asprin, but may be going onto meds. I have always had burning in my hands and feet, with a bit of discomfort in my legs. Recent it had got so much worse, never goes
Mauritiu
in
MPN Voice
9 months ago
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