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Experiences with
Hydroxycarbamide
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HGB fluctuating what is typical-newbie
I was diagnosed with P. Vera, I have the JAK2 mutation; this was the end of April 2017. I am on Aspirin and hydroxyurea HU, plus diuretics for blood pressure and a statin. My HGB started at 22 and with weekly phlebotomy and the 500 mg HU it had gone down steadily to 18 over 4 weeks. However, today at
I was diagnosed with P. Vera, I have the JAK2 mutation; this was the end of April 2017. I am on Aspirin and hydroxyurea HU, plus diuretics for blood pressure and a statin. My HGB started at 22 and with weekly phlebotomy and the 500 mg HU it had gone down steadily to 18 over 4 weeks. However, today at
Johnsb
in
MPN Voice
7 years ago
Question about terms
Hello, I am from the USA and would like some clarification. I was diagnosed with PV due to elevated platelets and HCT and a positive JAC 2. I am currently managed by 500 mg of Hydroxyurea and baby aspirin, and have weaned down my therapeutic phlebotomies to one every three months. I notice that most
Hello, I am from the USA and would like some clarification. I was diagnosed with PV due to elevated platelets and HCT and a positive JAC 2. I am currently managed by 500 mg of Hydroxyurea and baby aspirin, and have weaned down my therapeutic phlebotomies to one every three months. I notice that most
tsperl
in
MPN Voice
7 years ago
I've to start on hydroxyurea
Any advice would be appreciated. Best wishes lainy 🤗
Any advice would be appreciated. Best wishes lainy 🤗
Lainy1
in
MPN Voice
7 years ago
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Found the courage to post!
I am not in the high risk category but because I was symptomatic with chronic headaches the haematologist put me on aspirin and
Hydroxycarbamide
. I am currently on 1000g a day and my platelets are now stable around 370 with no more debilitating headaches!
I am not in the high risk category but because I was symptomatic with chronic headaches the haematologist put me on aspirin and
Hydroxycarbamide
. I am currently on 1000g a day and my platelets are now stable around 370 with no more debilitating headaches!
Mickymitch
in
MPN Voice
7 years ago
Hydroxyurea under age 50 ? Anyone
Hi MPN family, I just want to ask is anyone on hydroxyurea that is around the 50 age mark ? Or do you defo not get put on it before 60. I know they are not keen before you are 60 due to other risks that come with it. Surely bringing my platelets down and reducing the risk of clot is better short term
Hi MPN family, I just want to ask is anyone on hydroxyurea that is around the 50 age mark ? Or do you defo not get put on it before 60. I know they are not keen before you are 60 due to other risks that come with it. Surely bringing my platelets down and reducing the risk of clot is better short term
Lainy1
in
MPN Voice
7 years ago
Just started on Hydroxycarbamide.
After fruitless injections of Erythropoietin, which did nothing to raise my HB of 86, my Haemotologist has just started me on Hydroxy, as my white cell count was rising and at present is 47. I am waiting for the results of a BMB and trephine, but apparently my counts were such that we could not wait
After fruitless injections of Erythropoietin, which did nothing to raise my HB of 86, my Haemotologist has just started me on Hydroxy, as my white cell count was rising and at present is 47. I am waiting for the results of a BMB and trephine, but apparently my counts were such that we could not wait
skipperL
in
MPN Voice
7 years ago
ET but feel great!
I had ET diagnosed in 2009 after routine blood tests revealed high platelets - and since I had had a heart attack in 2006 the consultant decided to prescribe
Hydroxycarbamide
.
I had ET diagnosed in 2009 after routine blood tests revealed high platelets - and since I had had a heart attack in 2006 the consultant decided to prescribe
Hydroxycarbamide
.
michaelg
in
MPN Voice
7 years ago
Enlarged spleen
I take
hydroxycarbamide
and asprin. Like many of us i have an enlarged spleen. I'd be interested to here from others that get spleen pain and what treatment you have had. Thanks
I take
hydroxycarbamide
and asprin. Like many of us i have an enlarged spleen. I'd be interested to here from others that get spleen pain and what treatment you have had. Thanks
Rich50
in
MPN Voice
7 years ago
I'm new here. I was recently diagnosed with ET. A question about onset of symptoms and fatigue.
Firstly, thank you to everyone for this forum, I have been quietly reading it for the last few days and have found it very helpful. For me the road that lead eventually to an ET diagnosis started with a visit to my GP towards the end of 2016, because I was suffering an odd collection of symptoms that
Firstly, thank you to everyone for this forum, I have been quietly reading it for the last few days and have found it very helpful. For me the road that lead eventually to an ET diagnosis started with a visit to my GP towards the end of 2016, because I was suffering an odd collection of symptoms that
stillkicking
in
MPN Voice
7 years ago
Newly diagnosed with PV
I have been experiencing PV symptoms for a couple of years - itchy skin and burning feet and I am now on
Hydroxycarbamide
2x500mg capsules a day.
I have been experiencing PV symptoms for a couple of years - itchy skin and burning feet and I am now on
Hydroxycarbamide
2x500mg capsules a day.
RosemaryHarper
in
MPN Voice
7 years ago
Polycythemia vera
I have dignosed 3 monthe back , Polycethemia vera. My RBC were high to 8.0. I used only hydroxyurea 3, 2 and last 1 daily. My CBC showing now RBC as on lowest range and HCT as 41%. Doctor stopped HU med. for 15 . I m of 57 age male with no other disease except some IBS n GERD, digestive track related
I have dignosed 3 monthe back , Polycethemia vera. My RBC were high to 8.0. I used only hydroxyurea 3, 2 and last 1 daily. My CBC showing now RBC as on lowest range and HCT as 41%. Doctor stopped HU med. for 15 . I m of 57 age male with no other disease except some IBS n GERD, digestive track related
Riazahmad
in
MPN Voice
7 years ago
Important info on hydrea
Hi everyone this attached document may help with info on Hydrea long term possible side effects. I have printed this out and keep it in my handbag in case I end up in hospital as many doctors are not aware of the unusual side effects you could get. I have had an impacted bowel many times which further
Hi everyone this attached document may help with info on Hydrea long term possible side effects. I have printed this out and keep it in my handbag in case I end up in hospital as many doctors are not aware of the unusual side effects you could get. I have had an impacted bowel many times which further
Pablo1
in
MPN Voice
7 years ago
Herbal supplement - Melissa Dream
I take
hydroxycarbamide
, aspirin, lisinopril, simvastatin and omerprezol as and when I need it. My friend has brought the above supplements out to Gran Canaria for me and says that they really do work. I am not sure about taking them with the cocktail of drugs that I have already.
I take
hydroxycarbamide
, aspirin, lisinopril, simvastatin and omerprezol as and when I need it. My friend has brought the above supplements out to Gran Canaria for me and says that they really do work. I am not sure about taking them with the cocktail of drugs that I have already.
Mardigras
in
MPN Voice
7 years ago
New member needing support
He's just started on
hydroxycarbamide
and getting very sore bones. Scared the drug might trigger something worse. He's anxious which is unlike him. It's making me anxious too. Should we speak to the nurse?
He's just started on
hydroxycarbamide
and getting very sore bones. Scared the drug might trigger something worse. He's anxious which is unlike him. It's making me anxious too. Should we speak to the nurse?
MarybellM
in
MPN Voice
7 years ago
Vonn65
Hi I have just been diagnosed with essential thrombocythaemia and am taking
hydroxycarbamide
a little concerned about side effects .
Hi I have just been diagnosed with essential thrombocythaemia and am taking
hydroxycarbamide
a little concerned about side effects .
Vonn65
in
MPN Voice
7 years ago
Side Effects
I am having E. T. From July 15. I am taking Hydroxyurea 500 more than 18 months but my weight gain by 9kgs. I would like to know that it is good sign or not. Also suffering from Charmpes on six part of my body. Also increase my creatine. What to do
I am having E. T. From July 15. I am taking Hydroxyurea 500 more than 18 months but my weight gain by 9kgs. I would like to know that it is good sign or not. Also suffering from Charmpes on six part of my body. Also increase my creatine. What to do
Kmbp50
in
MPN Voice
7 years ago
ET and Sun Exposure
I am now on 2 x 500mg of
Hydroxycarbamide
and baby aspirin which seems to have stabilized my platelet count to around 320/350. I now only see my hemo every 3 months. On to my question....does anybody know if too much sun exposure with my condition is a bad thing?
I am now on 2 x 500mg of
Hydroxycarbamide
and baby aspirin which seems to have stabilized my platelet count to around 320/350. I now only see my hemo every 3 months. On to my question....does anybody know if too much sun exposure with my condition is a bad thing?
retromicky
in
MPN Voice
7 years ago
New
Started taking
hydroxycarbamide
, but unfortunately it did not agree with me, my consultant took me off them 2 weeks ago and i am seeing consultant this thursday to start another medication . Is it normal to feel so exhausted.
Started taking
hydroxycarbamide
, but unfortunately it did not agree with me, my consultant took me off them 2 weeks ago and i am seeing consultant this thursday to start another medication . Is it normal to feel so exhausted.
linphy
in
Leukaemia CARE
7 years ago
Prescription charges
I have been taking
hydroxycarbamide
since & have had 3 years taking interferon (I had 2 babies) . My question is regarding prescription charges in England......
I have been taking
hydroxycarbamide
since & have had 3 years taking interferon (I had 2 babies) . My question is regarding prescription charges in England......
Nickyanne
in
MPN Voice
7 years ago
Starting Hydroxyurea
As my platlets currently 908 have been slowly rising have been told I should start on Hydroxyurea. I'm 45 in good condition and don't really have any symptoms apart from feeling occasionally lightheaded. I'm just worried that this is going to introduce more problems than I currently have. I know it's
As my platlets currently 908 have been slowly rising have been told I should start on Hydroxyurea. I'm 45 in good condition and don't really have any symptoms apart from feeling occasionally lightheaded. I'm just worried that this is going to introduce more problems than I currently have. I know it's
Jasbak22
in
MPN Voice
7 years ago
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