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Experiences with
Hydroxycarbamide
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Confused about diagnosis
I was prescribed 500gm
Hydroxycarbamide
4 days a week and Allopurinol. I was already on Elequis for Afib, so no Asprin.
I was prescribed 500gm
Hydroxycarbamide
4 days a week and Allopurinol. I was already on Elequis for Afib, so no Asprin.
Blackroc
in
MPN Voice
11 months ago
Bone Marrow Biopsy
Haematology Specialist Registrar phoned tonight to say MDT have advised a BMB (previous discussion on 14/9 was think about
Hydroxycarbamide
). How did you get on with having this procedure?? is is very uncomfortable?
Haematology Specialist Registrar phoned tonight to say MDT have advised a BMB (previous discussion on 14/9 was think about
Hydroxycarbamide
). How did you get on with having this procedure?? is is very uncomfortable?
Carol0925
in
MPN Voice
9 months ago
MPN ET, Hydroxycarbamide & wrist pain
I'm on 12 x 500 mg
hydroxycarbamide
per week. My wrists became painful soon after the last increase from 10 to 12 tablets per week. I mentioned this to my consultant last week, but he couldn't enlighten me as to the likely cause. It could be the underlying ET.
I'm on 12 x 500 mg
hydroxycarbamide
per week. My wrists became painful soon after the last increase from 10 to 12 tablets per week. I mentioned this to my consultant last week, but he couldn't enlighten me as to the likely cause. It could be the underlying ET.
HoundSept2022
in
MPN Voice
1 year ago
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Petechial rash
I was diagnosed two years ago and I take
Hydroxycarbamide
500 mg daily. My blood levels settled down very well on this treatment - the platelets sitting around 400. I am also taking the blood thinner - rivaroxaban 20 mg daily - as I had already suffered blood clots.
I was diagnosed two years ago and I take
Hydroxycarbamide
500 mg daily. My blood levels settled down very well on this treatment - the platelets sitting around 400. I am also taking the blood thinner - rivaroxaban 20 mg daily - as I had already suffered blood clots.
Jelbea
in
MPN Voice
1 year ago
Blood pressure treatment - Irbesartan
I have Jak 2 positive ET controlled on
hydroxycarbamide
, aspirin and rivaroxaban. I went to GP to-day to get sun spots on my face treated with liquid nitrogen and whilst there he discussed with me my borderline/raised blood pressure.
I have Jak 2 positive ET controlled on
hydroxycarbamide
, aspirin and rivaroxaban. I went to GP to-day to get sun spots on my face treated with liquid nitrogen and whilst there he discussed with me my borderline/raised blood pressure.
Jelbea
in
MPN Voice
1 year ago
EPO testing
Which gives her consultant reason to increase
hydroxycarbamide
doses and frequency of RBC transfusions.
Which gives her consultant reason to increase
hydroxycarbamide
doses and frequency of RBC transfusions.
jointpain
in
MPN Voice
1 year ago
Managing my MPN
Now on 2000mg 4 tablets a day of
Hydroxycarbamide
and have been taking for 6 months and my bloods are not dropping at all and are staying at 650?! My specialist is scratching her head and seems to be very laid back due to her massive work load at my hospital!?
Now on 2000mg 4 tablets a day of
Hydroxycarbamide
and have been taking for 6 months and my bloods are not dropping at all and are staying at 650?! My specialist is scratching her head and seems to be very laid back due to her massive work load at my hospital!?
Pappafraser
in
MPN Voice
7 months ago
Appointments-results
platelets going back up 662 ,wbc 6.3 haemoglobin 131, saw different doctor told him about some symptoms are appearing again still not heard from neurology he going try and see if can expedite this appointment,said further he will discuss my case in there MDT meeting again to see if there could try me on
Hydroxycarbamide
platelets going back up 662 ,wbc 6.3 haemoglobin 131, saw different doctor told him about some symptoms are appearing again still not heard from neurology he going try and see if can expedite this appointment,said further he will discuss my case in there MDT meeting again to see if there could try me on
Hydroxycarbamide
Jody00
in
MPN Voice
1 year ago
Pv hydroxycarbamide medication
Has anybody had issues with their eyes from taking these medication. I was told yesterday my lens in my eye has slightly changed colour and I have had floaters ?
Has anybody had issues with their eyes from taking these medication. I was told yesterday my lens in my eye has slightly changed colour and I have had floaters ?
Mandz12
in
MPN Voice
1 year ago
Original symptoms coming back
Hi, I was diagnosed with triple negative ET in May 2017 and have been on
Hydroxycarbamide
since June 2017, my platelets when diagnosed were at 1300 and over the years have gone down and sit between 200-400.
Hi, I was diagnosed with triple negative ET in May 2017 and have been on
Hydroxycarbamide
since June 2017, my platelets when diagnosed were at 1300 and over the years have gone down and sit between 200-400.
beckyluck
in
MPN Voice
1 year ago
Given new 500mg Hydroxycarbamide tablets today!?
Came off for 2 months & now have been prescribed 500mg
Hydroxycarbamide
Any advice would be greatly appreciated What time of day is best to take my 2 tablet dose? Thanks in advance Grant
Came off for 2 months & now have been prescribed 500mg
Hydroxycarbamide
Any advice would be greatly appreciated What time of day is best to take my 2 tablet dose? Thanks in advance Grant
Pappafraser
in
MPN Voice
11 months ago
Detox update
I know they can vary but been getting lower consistently.So I'll start
Hydroxycarbamide
again tommorow. Had no thoughts about what results would be so not upset ...
I know they can vary but been getting lower consistently.So I'll start
Hydroxycarbamide
again tommorow. Had no thoughts about what results would be so not upset ...
Mostew
in
MPN Voice
1 year ago
bone marrow
I’ve got essential thrombocythemia jak 2 positive I’ve been on
hydroxycarbamide
for 8 years had my spleen out in 2014 I’ve had lots of problems associated with E T Blood in urine Haematoma X 2 angina attack X 1 blurred vision constantly but intermittent I’ve had a TIA my question is I’ve had two
I’ve got essential thrombocythemia jak 2 positive I’ve been on
hydroxycarbamide
for 8 years had my spleen out in 2014 I’ve had lots of problems associated with E T Blood in urine Haematoma X 2 angina attack X 1 blurred vision constantly but intermittent I’ve had a TIA my question is I’ve had two
Phil1955
in
MPN Voice
1 year ago
Chorea and PV
She is 86 and is taking
Hydroxycarbamide
for PV (amongst other medications). Around a couple of years ago my mother started to experience involuntary body movements, frequent bighting of her lip / cheek and difficulty swallowing together with worsened balance generally.
She is 86 and is taking
Hydroxycarbamide
for PV (amongst other medications). Around a couple of years ago my mother started to experience involuntary body movements, frequent bighting of her lip / cheek and difficulty swallowing together with worsened balance generally.
PFR1937
in
MPN Voice
1 year ago
Question for the group
I was diagnosed in 2005 with PV jak 2 positive, since then neither my local hospital hematology or guy's hematology have been able to control my counts , going from high with platelets 4,000 ,WBC 33 ,neutrophils 29,then to lows of neutropenia, my medication was
hydroxycarbamide
and anagrelide , also
I was diagnosed in 2005 with PV jak 2 positive, since then neither my local hospital hematology or guy's hematology have been able to control my counts , going from high with platelets 4,000 ,WBC 33 ,neutrophils 29,then to lows of neutropenia, my medication was
hydroxycarbamide
and anagrelide , also
Regge
in
MPN Voice
1 year ago
MPN Voice Vlogcasts – In Conversation With… Alisia O’Sullivan, ET patient & MPN Voice volunteer
Alisia then talks about her symptoms and medication, changing from
Hydroxycarbamide
, due to intolerance, to Pegylated Interferon which she tolerates very well. We hope that you enjoyed this conversation, please send feedback and any questions to info@mpnvoice.org.uk.
Alisia then talks about her symptoms and medication, changing from
Hydroxycarbamide
, due to intolerance, to Pegylated Interferon which she tolerates very well. We hope that you enjoyed this conversation, please send feedback and any questions to info@mpnvoice.org.uk.
Mazcd
MPNVoice
in
MPN Voice
1 year ago
Ruxolitinib Versus Best Available Therapy for Polycythemia Vera Intolerant or Resistant to Hydroxycarbamide in a Randomized Trial
« Patients with PV often have high JAK2 V 617F VAF (>50%) because of the emergence of a dominant clone with concurrent loss of wild-type JAK2, which in turn is associated with increased risk of vascular events and transformation to myelofibrosis. In MPN, unlike other hematologic malignancies, for example
« Patients with PV often have high JAK2 V 617F VAF (>50%) because of the emergence of a dominant clone with concurrent loss of wild-type JAK2, which in turn is associated with increased risk of vascular events and transformation to myelofibrosis. In MPN, unlike other hematologic malignancies, for example
Manouche
in
MPN Voice
1 year ago
Dizziness
I have had ET for over 4 years, been on
Hydroxycarbamide
with no adverse effects.The last couple of months I have been getting increasingly lightheaded and dizzy, often feeling like I'm going to pass out. More recently started getting pins and needles in fingers.
I have had ET for over 4 years, been on
Hydroxycarbamide
with no adverse effects.The last couple of months I have been getting increasingly lightheaded and dizzy, often feeling like I'm going to pass out. More recently started getting pins and needles in fingers.
Pippapot
in
MPN Voice
1 year ago
Switching from hydroxy carbamide to Peg interferon
Greetings All, I'd like your opinion about a considered change of meds from
hydroxycarbamide
to peg interferon that I take for my ET. I've been on hydroxy for 26 months now and gained weight (about 5 kg) despite being a habitual dieter.
Greetings All, I'd like your opinion about a considered change of meds from
hydroxycarbamide
to peg interferon that I take for my ET. I've been on hydroxy for 26 months now and gained weight (about 5 kg) despite being a habitual dieter.
Hidden
in
MPN Voice
1 year ago
pain in tummy
stomach ache for days on
hydroxycarbamide
500mg a day any tips Iv tried everything
stomach ache for days on
hydroxycarbamide
500mg a day any tips Iv tried everything
Cat1001954
in
MPN Voice
1 year ago
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