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Experiences with
Hydroxycarbamide
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Diagnosed with PV but normal RBC count
My specialist has started me on
Hydroxycarbamide
and aspirin. Anyone else having a diagnosis of PV but have normal RBC count?
My specialist has started me on
Hydroxycarbamide
and aspirin. Anyone else having a diagnosis of PV but have normal RBC count?
Fuzzy_Duck
in
MPN Voice
5 years ago
A worried Mum’s need to know...
At last week’s haematology clinic he was told that some of his numbers have started to rise again, so they’d test him in November and, if that trend has continued, they will start him on
Hydroxycarbamide
.
At last week’s haematology clinic he was told that some of his numbers have started to rise again, so they’d test him in November and, if that trend has continued, they will start him on
Hydroxycarbamide
.
twinkletoes01
in
MPN Voice
5 years ago
ET and Joint Pain
I'm on 1000/500
Hydroxycarbamide
alternate days. I'm managing pretty well and keeping active by running to try to alleviate the tiredness. One side affect I do have is quite severe joint pain in my lower legs first thing in the morning.
I'm on 1000/500
Hydroxycarbamide
alternate days. I'm managing pretty well and keeping active by running to try to alleviate the tiredness. One side affect I do have is quite severe joint pain in my lower legs first thing in the morning.
Trueblue8
in
MPN Voice
5 years ago
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Blood pressure
I'm trying to figure out what might be happening with the bloods on
hydroxycarbamide
. I had been told my red blood cells were a bit enlarged. A few folk on here said that's normal on the meds.
I'm trying to figure out what might be happening with the bloods on
hydroxycarbamide
. I had been told my red blood cells were a bit enlarged. A few folk on here said that's normal on the meds.
carlyjo
in
MPN Voice
5 years ago
Viruses
I have ET jak2 diagnosed in 2000 treated with
Hydroxycarbamide
.
I have ET jak2 diagnosed in 2000 treated with
Hydroxycarbamide
.
Bobthecob
in
MPN Voice
5 years ago
Now something else to contend with 🤪
Well when my eyes were done the consultant thought is could be the
Hydroxycarbamide
that had sent my pressure up in my eyes, as there was no sign of it last year when my eyes were tested, so very strange. Just wondering if anyone else has had any problems like this.
Well when my eyes were done the consultant thought is could be the
Hydroxycarbamide
that had sent my pressure up in my eyes, as there was no sign of it last year when my eyes were tested, so very strange. Just wondering if anyone else has had any problems like this.
Superwoman
in
MPN Voice
5 years ago
I have had PV Jak2 V617 positive for 4 years and just entered PV study RG7388 for Idasanutlin.
I am currently a patient participating in cycle 2 of the trial RG7388 Idasanutlin. I am currently 43 years old. Diagnosed 4.5 years ago through BMB, Jak 2 V617F positive. At about 3.5 years a significantly increased symptom burden was interfering with work, and quality of life. At the start of the
I am currently a patient participating in cycle 2 of the trial RG7388 Idasanutlin. I am currently 43 years old. Diagnosed 4.5 years ago through BMB, Jak 2 V617F positive. At about 3.5 years a significantly increased symptom burden was interfering with work, and quality of life. At the start of the
zocario
in
MPN Voice
5 years ago
Rash On the Chest with Muscle Weakness
©VisualDx Rheumatology Network Editorial Staff October 5, 2019
Dermatomyositis
Synopsis Dermatomyositis is a multisystem autoimmune connective tissue disease that is most often characterized by a symmetric proximal extensor inflammatory myopathy, a characteristic violaceous cutaneous eruption
©VisualDx Rheumatology Network Editorial Staff October 5, 2019
Dermatomyositis
Synopsis Dermatomyositis is a multisystem autoimmune connective tissue disease that is most often characterized by a symmetric proximal extensor inflammatory myopathy, a characteristic violaceous cutaneous eruption
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
5 years ago
Anyone have problems with their hands being cold and painful??
Hi all, I’m having a problem with my hands, they get very cold and painful in cold stores, cars, etc. with air conditioning on. I was wondering if anyone else has this problem. I have PV and am on 500 mg of Hydroxyurea plus low dose aspirin and also warfarin. Thanks for any responses. Ann16
Hi all, I’m having a problem with my hands, they get very cold and painful in cold stores, cars, etc. with air conditioning on. I was wondering if anyone else has this problem. I have PV and am on 500 mg of Hydroxyurea plus low dose aspirin and also warfarin. Thanks for any responses. Ann16
Ann16
in
MPN Voice
5 years ago
Liver lesion
I was diagnosed with jak2 + and ET in March... my platelets were 621 but I have had a constant headache for 6 months... my haematologist started me on
hydroxycarbamide
500mg once daily and 5 weeks into treatment my headaches had started to go.
I was diagnosed with jak2 + and ET in March... my platelets were 621 but I have had a constant headache for 6 months... my haematologist started me on
hydroxycarbamide
500mg once daily and 5 weeks into treatment my headaches had started to go.
Dazakella2010
in
MPN Voice
5 years ago
Polycythemia Vera and ET ? I have both
im Jak2 positive and on
hydroxycarbamide
1500mg daily Thanks Phil
im Jak2 positive and on
hydroxycarbamide
1500mg daily Thanks Phil
PhilReade
in
MPN Voice
5 years ago
Enlarged red blood cells
I'm on
hydroxycarbamide
- 500 every day, 1000 x2 a week. Am wondering if this is something anyone else has experienced. Trying not to worry or Google it 😬thanks Carolann xx
I'm on
hydroxycarbamide
- 500 every day, 1000 x2 a week. Am wondering if this is something anyone else has experienced. Trying not to worry or Google it 😬thanks Carolann xx
carlyjo
in
MPN Voice
5 years ago
MPN Voice needs your feedback to support an application to the Scottish Medicines Consortium (SMC)
Ruxolitinib (Jakavi) is a treatment for PV patients who have failed or are intolerant of first line therapy with
Hydroxycarbamide
(Hydrea or Hydroxyurea). The drug is effective in treating PV and in clinical trials has improved patients’ quality of life.
Ruxolitinib (Jakavi) is a treatment for PV patients who have failed or are intolerant of first line therapy with
Hydroxycarbamide
(Hydrea or Hydroxyurea). The drug is effective in treating PV and in clinical trials has improved patients’ quality of life.
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Toxic Drug ..
Anybody out there on Hydroxyurea? I have been prescribed this but I'm not confident after the amount of info I have read of its side effects and longterm health problems.
Anybody out there on Hydroxyurea? I have been prescribed this but I'm not confident after the amount of info I have read of its side effects and longterm health problems.
Finalybeingheard
in
Sickle Cell Society
5 years ago
hydroxycarbamide or pv
About 3-4 months ago I started to become anaemic with increasing nausea fatigue etc. MY haematologist reduced the dose of hydroxy I was taking, and I almost immediately felt better, marked decrease in symptoms . However this proved short lived, and after about 3 weeks my nausea returned with a vengeance
About 3-4 months ago I started to become anaemic with increasing nausea fatigue etc. MY haematologist reduced the dose of hydroxy I was taking, and I almost immediately felt better, marked decrease in symptoms . However this proved short lived, and after about 3 weeks my nausea returned with a vengeance
paddy67
in
MPN Voice
5 years ago
Pegasys, does it work for you ?
Hi ET peeps. I am on this forum from my son who was diagnosed with ET after a stroke at age 10 . he has been treated with Hydroxyurea untill last year when we switched to Ruxolitnib. The later has been less successful at getting his Platelets down below 1,000. I have noticed lately a lot of people
Hi ET peeps. I am on this forum from my son who was diagnosed with ET after a stroke at age 10 . he has been treated with Hydroxyurea untill last year when we switched to Ruxolitnib. The later has been less successful at getting his Platelets down below 1,000. I have noticed lately a lot of people
Louforjack
in
MPN Voice
5 years ago
Taking hydroxycarbamide
I’ve never asked a question before, I have ET and take
hydroxycarbamide
. I take 3 tablets a day and my consultant says that taking them all at once in the morning is fine... it doesn’t seem right as normally you would space medication out?
I’ve never asked a question before, I have ET and take
hydroxycarbamide
. I take 3 tablets a day and my consultant says that taking them all at once in the morning is fine... it doesn’t seem right as normally you would space medication out?
Jane10
in
MPN Voice
5 years ago
Up and Down!
I was recently diagnosed with ET JAK 2, I'm on 1000mg
Hydroxycarbamide
and low dose aspirin. I've posted on here about the fatigue, which I know is a common problem. However, I just wondered if anyone is suffering emotionally?
I was recently diagnosed with ET JAK 2, I'm on 1000mg
Hydroxycarbamide
and low dose aspirin. I've posted on here about the fatigue, which I know is a common problem. However, I just wondered if anyone is suffering emotionally?
Trueblue8
in
MPN Voice
5 years ago
Hydroxyurea
Hi my name is Diane and I am 69 years old. I was diagnosed with PV jak 2 positive in January. My treatment so far has been phlebotomy and daily aspirin. After 4 treatments my platelets have risen from 506 to 526. Hemocrits are at .46 lymphocytes 1.2. Leukocytes are rising. I have a new doctor now
Hi my name is Diane and I am 69 years old. I was diagnosed with PV jak 2 positive in January. My treatment so far has been phlebotomy and daily aspirin. After 4 treatments my platelets have risen from 506 to 526. Hemocrits are at .46 lymphocytes 1.2. Leukocytes are rising. I have a new doctor now
dladydi
in
MPN Voice
5 years ago
Results from hematologist
Hello, all. Yesterday I had my six week check up with my hematologist. He had taken me off of hydroxyurea last time because of anemia. I was just taking Jakafi and baby aspirin as I have PV. My platelets stayed the same, 668,000, but my rdw has increased to 30.4, which seems really high to me. My HGB
Hello, all. Yesterday I had my six week check up with my hematologist. He had taken me off of hydroxyurea last time because of anemia. I was just taking Jakafi and baby aspirin as I have PV. My platelets stayed the same, 668,000, but my rdw has increased to 30.4, which seems really high to me. My HGB
Cja1956
in
MPN Voice
5 years ago
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