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Experiences with
Hydroxycarbamide
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PV (JAK2) and Thrombocythemia
Hello, I have PV and the JAK 2 mutation. I been taking low dose aspirin and having phlebotomies for the last 5 years. I recently tried Hydroxyurea but had bad side effects. After a month, I stopped taking it. Now my Dr. has me on Anagrelide for the High Platelets and continuing the phlebotomies
Hello, I have PV and the JAK 2 mutation. I been taking low dose aspirin and having phlebotomies for the last 5 years. I recently tried Hydroxyurea but had bad side effects. After a month, I stopped taking it. Now my Dr. has me on Anagrelide for the High Platelets and continuing the phlebotomies
Buggerbear
in
MPN Voice
5 years ago
How long for hydroxyurea to lower platelets?
My mum has been diagnosed with ET and has been taking hydroxyurea since March, with her dose increasing to 1000mg/1500mg on various days of the week. She just had her check up and blood results show no difference in platelet count & the consultant recommended seeing a rheumatologist. How long should
My mum has been diagnosed with ET and has been taking hydroxyurea since March, with her dose increasing to 1000mg/1500mg on various days of the week. She just had her check up and blood results show no difference in platelet count & the consultant recommended seeing a rheumatologist. How long should
Pigeon18
in
MPN Voice
5 years ago
ET and Pregnancy
Hi. I am 35 year old male diagnosed with ET in 2018. Its been 1.5 years I’m on Hydroxyurea. Does anybody has any idea on planning a baby while having this medicine. Some articles say 3-6 months or upto 1 year break from medicine is important for males on Hydroxyurea. I tried to take a break and in 3
Hi. I am 35 year old male diagnosed with ET in 2018. Its been 1.5 years I’m on Hydroxyurea. Does anybody has any idea on planning a baby while having this medicine. Some articles say 3-6 months or upto 1 year break from medicine is important for males on Hydroxyurea. I tried to take a break and in 3
MrThara
in
MPN Voice
5 years ago
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Hypothyroidism and Hydro
Hi. My hypothyroidism is a mess right now 8,49 with 4,67 the upper normal. Just wondering if Hydroxyurea had anything to do with that? It has been many months since I had a test and suddenly this. Any of you that had similar condition?
Hi. My hypothyroidism is a mess right now 8,49 with 4,67 the upper normal. Just wondering if Hydroxyurea had anything to do with that? It has been many months since I had a test and suddenly this. Any of you that had similar condition?
Kelly2
in
MPN Voice
5 years ago
reflexology
Take 17
Hydroxycarbamide
each week . Cope Ok . Was given a gift of a session of reflexology . Twenty four hours later wow the pain in left foot and leg -which then went to right leg !! now one week later left with right ankle feeling l as though I must have been run over !
Take 17
Hydroxycarbamide
each week . Cope Ok . Was given a gift of a session of reflexology . Twenty four hours later wow the pain in left foot and leg -which then went to right leg !! now one week later left with right ankle feeling l as though I must have been run over !
Lucycourt
in
MPN Voice
5 years ago
Hydroxyurea or not?
Hi everyone. I have been reading your posts for several months and need to introduce myself. I was diagnosed with PV Jak2 at age 65 and am now 73. Platelets high also. My treatments have been aspirin and phlebotomy every eight weeks if hematocrit is above 42 which it always is. Symptoms began about
Hi everyone. I have been reading your posts for several months and need to introduce myself. I was diagnosed with PV Jak2 at age 65 and am now 73. Platelets high also. My treatments have been aspirin and phlebotomy every eight weeks if hematocrit is above 42 which it always is. Symptoms began about
falconered53
in
MPN Voice
5 years ago
Pegasys interferon shortage
I’ve to go back on Friday as they could only prescribe 1 week last time, and if they haven’t managed to source it yet I may need to move over to
hydroxycarbamide
until they can source more which worries me a bit. Has anyone else made this transition and what was your experience?
I’ve to go back on Friday as they could only prescribe 1 week last time, and if they haven’t managed to source it yet I may need to move over to
hydroxycarbamide
until they can source more which worries me a bit. Has anyone else made this transition and what was your experience?
Spam1979
in
MPN Voice
5 years ago
newly diagnosed ET jak 2+
HI this is my first post as I'm new to this forum I am newly diagnosed with ET jak 2 + 3 weeks ago at the age of 52was told this is very rare at my age I live in Australia its been a whirlwind and a great shock but just getting my head around the disease with all the great information I've found on
HI this is my first post as I'm new to this forum I am newly diagnosed with ET jak 2 + 3 weeks ago at the age of 52was told this is very rare at my age I live in Australia its been a whirlwind and a great shock but just getting my head around the disease with all the great information I've found on
Kazzaa
in
MPN Voice
5 years ago
Good news!
So I went to the hematologist today and for the first time in years my platelets were at normal levels. But my anemia is getting worse. He took me off hydroxyurea which I’ve been taking every day for over over 11 years. I also take 20 mgs of Jakafi every day. I have ET Jak2 positive and PV. Any thoughts
So I went to the hematologist today and for the first time in years my platelets were at normal levels. But my anemia is getting worse. He took me off hydroxyurea which I’ve been taking every day for over over 11 years. I also take 20 mgs of Jakafi every day. I have ET Jak2 positive and PV. Any thoughts
Cja1956
in
MPN Voice
5 years ago
Hydro and MF
I am trying to find the post someone wrote about Hydroxyurea inducing progression to MF. Could you please repost it for me?
I am trying to find the post someone wrote about Hydroxyurea inducing progression to MF. Could you please repost it for me?
Kelly2
in
MPN Voice
5 years ago
Patient of ESSENTIAL THROMBOCYTOSIS on medication of hydroxyurea , but gradually RBC ALSO DECREASING !
I am recently on hydroxy urea and hav an okay platlet level ie 5-5,50000 but my rbc count is decreasing gradually in every new test repot Can someone please let me know why this is happening ? Thanku
I am recently on hydroxy urea and hav an okay platlet level ie 5-5,50000 but my rbc count is decreasing gradually in every new test repot Can someone please let me know why this is happening ? Thanku
Lucklife
in
Fight MPN
5 years ago
Having teeth out
I’m on aspirin and
hydroxycarbamide
. Any advise would be grateful. Will my Heamatologist need to speak with my dentist? Am I best having general anesthetic rather than local? Jackie
I’m on aspirin and
hydroxycarbamide
. Any advise would be grateful. Will my Heamatologist need to speak with my dentist? Am I best having general anesthetic rather than local? Jackie
Grumpyfairy
in
MPN Voice
5 years ago
I’ve had Polycythemia Vera for 10 years. Dr. suspects it is turning into Myleofibrosis
Good morning. I was diagnosed about 10 years ago with Polycythemia Vera. I am Jak2 positive. I was prescribed hydroxyurea and one low-dose aspirin a day. I also had phlebotomies when my hematocrit was over 42. Recently my hematologist felt like my polycythemia vera May be changing into Myleofibrosis.
Good morning. I was diagnosed about 10 years ago with Polycythemia Vera. I am Jak2 positive. I was prescribed hydroxyurea and one low-dose aspirin a day. I also had phlebotomies when my hematocrit was over 42. Recently my hematologist felt like my polycythemia vera May be changing into Myleofibrosis.
Cknight6
in
MPN Voice
5 years ago
AXSL MUTATION
I have been asking about Ruxolitinib with my Haematologist but I'm stuck on
Hydroxycarbamide
until I get worse and reach Intermediate 2.. Having received this today AXSL, I'm wondering if this will strengthen my case for Ruxolitinib..
I have been asking about Ruxolitinib with my Haematologist but I'm stuck on
Hydroxycarbamide
until I get worse and reach Intermediate 2.. Having received this today AXSL, I'm wondering if this will strengthen my case for Ruxolitinib..
pontygirl
in
MPN Voice
5 years ago
Essential Thrombocythaemia
My dose of
Hydroxycarbamide
has been increased since Christmas, I have always had fatigue but since dosage increase the symptoms of fatigue have increased. I have had five weeks off work and now "trying" a phased return and struggling. Does anyone else struggle with fatigue?
My dose of
Hydroxycarbamide
has been increased since Christmas, I have always had fatigue but since dosage increase the symptoms of fatigue have increased. I have had five weeks off work and now "trying" a phased return and struggling. Does anyone else struggle with fatigue?
Bobthecob
in
MPN Voice
5 years ago
new
Well never thought of ever being on a site like this but then i never thought i would get a form of cancer either , Diagnosed with blood cancer and soon to be taking
hydroxycarbamide
be interesting to hear from anyone else that has and uses this treatment
Well never thought of ever being on a site like this but then i never thought i would get a form of cancer either , Diagnosed with blood cancer and soon to be taking
hydroxycarbamide
be interesting to hear from anyone else that has and uses this treatment
notsojammy
in
Together Against Cancer
5 years ago
Newly diagnosed sick or just a big moaner
Initially prescribed 500mg
Hydroxycarbamide
but only reduced platelets to 1416 so upped to 1000 daily. The last count was 767 so upped dose Saturday and Sunday to 1500mg. From going on tablets developed joint and muscle pain In both legs. My feet got worse diagnosed with secondary Erythromelalgia.
Initially prescribed 500mg
Hydroxycarbamide
but only reduced platelets to 1416 so upped to 1000 daily. The last count was 767 so upped dose Saturday and Sunday to 1500mg. From going on tablets developed joint and muscle pain In both legs. My feet got worse diagnosed with secondary Erythromelalgia.
Yorkstyke
in
MPN Voice
5 years ago
Diagnosis with Polycythemia today
Today I went to see my Hematologist he said I have mpn Polycythemia. I had bloods taken shows my bloods are evaluating and everything else. My ct scan shows my spleen is fine and everything else is ok. He wants me to take Asprin. He wants me to decide treatment either Hydroxyurea or peg interferon treatment
Today I went to see my Hematologist he said I have mpn Polycythemia. I had bloods taken shows my bloods are evaluating and everything else. My ct scan shows my spleen is fine and everything else is ok. He wants me to take Asprin. He wants me to decide treatment either Hydroxyurea or peg interferon treatment
Zar77
in
MPN Voice
5 years ago
Low RDW-CV
Hi everyone! Got my CBC result yesterday with the following results: WBC Count- 8400 RBC Count- 3.91 Hemoglobin- 13.4 Hematocrit- 40.3 Platelet Count- H 469000 MCV- H 103.0 MCH- H 34.3 MCHC- 33.2 RDW-CV- L 10.7 Neutrophils- 51.4 Lymphocytes- 39.7 Monocytes- 7.3 Eosinophils- L 1.6 Basophils- 0.0 I'm disturbed
Hi everyone! Got my CBC result yesterday with the following results: WBC Count- 8400 RBC Count- 3.91 Hemoglobin- 13.4 Hematocrit- 40.3 Platelet Count- H 469000 MCV- H 103.0 MCH- H 34.3 MCHC- 33.2 RDW-CV- L 10.7 Neutrophils- 51.4 Lymphocytes- 39.7 Monocytes- 7.3 Eosinophils- L 1.6 Basophils- 0.0 I'm disturbed
Yona
in
MPN Voice
5 years ago
Hydroxy and sun?
Diagnosed with ET CALR+ 2 yrs ago and 4 weeks ago I was put on a daily dose of Hydroxyurea 500mgday . My hubby and I are heading to the beach for my 67 birthday and I’m a little confused about sun exposure. Should sun be completely avoided unless covered up, or does slathering myself in 50+sunscreen
Diagnosed with ET CALR+ 2 yrs ago and 4 weeks ago I was put on a daily dose of Hydroxyurea 500mgday . My hubby and I are heading to the beach for my 67 birthday and I’m a little confused about sun exposure. Should sun be completely avoided unless covered up, or does slathering myself in 50+sunscreen
mimduf
in
MPN Voice
5 years ago
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